Page last updated 03/16/08
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Estephany Portillo
10 years old
Diagnosed with Fanconi Aplastic Anemia
!!!!**UPDATES ON ESTEPHANY NICOLE BELOW**!!!!
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Estephany was just recently diagnosed with Fanconi Anemia(FA). This news came about after she has been sick with bleeding troubles and other symptoms for a few years. Due to her mother's concern, they obtained travel visas to leave Honduras and come to the US to seek an answer and treatment to why Estephany had been so sick.
The biggest problem this family is facing is a complete lack of insurance and the ability to now qualify for insurance. Estephany needs medicines and a bone marrow transplant to save her life. Not only is she faced with the Fanconi Anemia, she is now faced with Bone Marrow Failure-Aplastic Anemia.
Estephany with her Grandmother
Estephany with me visiting
Esthephany with her Mom
ESTEPHANY NICOLE
Estephany has a very close family. Currently, her and her mom are staying with Estephany's Aunt Norma. I will try to add more family pictures in a short while. I will also add updates as they become available to this site. Her family has no computer or Internet Access.
Estephany's Aunt Norma and 1 year old Twin Cousins
UPDATE ON ESTEPHANY SEPTEMBER 17, 2005
Estephany is having a LOT of bruising right now. Along with the Fanconi Anemia, she also is suffering from Bone Marrow Failure (Aplastic Anemia) which causes your body's red blood cells and platelets to fail to produce. Please come back for further updates.
Estephany at her Aunt Norma's House
UPDATE ON ESTEPHANY SEPTEMBER 18, 2005
Please keep Estephany and your family in your prayers at this time. It is very hard to keep hearing "NO" when it comes to the idea of transplant for your child. This would be Estephany's only chance at a longer life. Due to "the way things run" this is what they are basically hearing. As a mom, this is unacceptable. We all have to fight for our children. That is what Estephany's Mom and Aunt are desperately doing. Only facilities that specialize in Bone Marrow Transplants can even open the doors to Estephany. All Children's Hospital, in St. Pete, is not one of these facilities. They are doing all they can for her and looking for help elsewhere. As time is going by, Estephany is getting worse. Her bruising is getting worse. Myron and I visited yesterday and took her some crafts to do as well as a present from one of our online donation friends. THANK YOU. So much has been discussed with this family and right now, QUALITY OF LIFE is very important to them. Myron went with them to a function last night and noticed how close Estephany and her Mom, Lourdez, are so close. Estephany will just stare at her mom (like in admiration) and then lean over on her and hold her hand. This is a 10 year old child who just wants to live and not see her Mom so worried. I know there is not much someone can do to literally save her life but prayer is so important at this time. Prayer that a center that can transplant her with new bone marrow will take her. Prayer that as they struggle financially that funds will come in. Estephany's Aunt, Norma, who has taken them in, has one year old twins. She was a single working Mom before and now she has taken in Estephany, her Mom and the desire and strength to fight for Estephany's life. I look at Estephany, as we visit, and just think, "If this was my baby..." I would like to share with you a few things Estephany likes. She LOVES Strawberry Shortcake. She also would like to have a computer. She used to take computer classes in Honduras and would love a computer to call her own. She is so well mannered and eager to do whatever she can. She made Myron, Katia and myself little ceramic figurines with our name on them as a thank you. She is so sweet. I know so many of you are following her, so I wanted to let you know a bit more about her. Her family is praying that Estephany will get her miracle and someday, be able to return home. I am sure if she could go back home, she would remember all the love shown to her while she was here. Also a few of you have asked how to pronounce her name. You do pronounce the E before Stephanie. She mainly goes by her middle name, which is Nicole. That is what her Mom and Aunt call her.
Here are some pictures from yesterday and last night.
SEPTEMBER 19, 2005 UPDATE ON ESTEPHANY
Estephany has been admitted to ACH for bleeding. From what I am gathering, she was bleeding into her mouth and it was clotting up in her throat. Please please please keep her in your prayers. If you would like to send balloons to her, please send them to All Children's Hospital, 801 6th St. South, St. Petersburg FL 33701 Floor 2SW, Attn: Estephany Portillo. I will post any updates as they come in on her condition.
UPDATE ON ESTEPHANY SEPTEMBER 23, 2005
We have gotten such a positive response of ideas and how people want to help. Thank you:)
Estephany was over here yesterday with her Mom so we could fill out some paperwork for her medical visa to be extended as well as let her Mom make some needed phone calls. While Katia and Estephany played together, her Mom and us had a heart to heart talk. Her Mom is really struggling with having to watch Estephany have more bleeding troubles more often. She wants Estephany's dad to be able to come up here and spend time as well as their little 10 month old baby. Her dad has to apply for a travel visa for this to be possible.
A lot of people have emailed me about different hospitals that come to mind. Estephany's doctors (which are also Katia's doctors) are communicating with these hospitals as well. Not every hospital that does transplants do transplants on Fanconi Anemia patients. This takes the possibilites of a "Yes" down even further. The hospitals that do, have not responded to take a "Charity Case". The fact that Estephany doesn't have insurance is not the same as if an American Citizen or even a Resident not having insurance. There is no way of qualifying for different financial aides. Therefore, it would have to be a complete Charity. At the same time, since Estephany's Fanconi Anemia has already gotten to the stage of Bone Marrow Failure (Aplastic Anemia), it makes her case even harder for many reasons. There is just so much to look at it and measure the possibilities. Since I KNOW that her doctors are doing all that can be done to try to find a center to do a "Charity Case Bone Marrow Transplant" we are focusing on what is going on here and now with Estephany's quality of life. We want to make sure she has her needed medicines which she does for the remainder of this month. That medicine helps with her bleeding. It doesn't stop the bleeding. The other thing we are doing with them is communicating with different people on their behalf due to the language barrier. I have been trying to get "Happy Mail" to Estephany using our PO BOX so that her spirits will be lifted. Her Mom loves to see her daughter happy. Estephany is very smart for her age and she is worried about all that is going on. We want to help to allow her to be a kid and as happy as she can be right now.
UPDATE SEPTEMBER 26, 2005
Estephany was admitted on Saturday for bleeding again as her platelet count had dropped very low. She had an area of bleeding on her arm that was swelling up and bruising under her skin.
Recently her Mom has filed to see if Estephany's Medical Visa can be extended until February. Her hope is that, with treatment, and possibly finding a place to take on Estephany for bone marrow transplant, this stay will prove to be a help in extending Estephany's life. The cost for this extension is $195.00. If you would like to help with this, a donation can be made below. Every donation helps with Estephany's medical cost and cost of living while here. As well as trips back and forth to clinic and the hospital, there are medication cost as well as many day to day bills. Another way of helping is with Phone Cards so Estephany and her Mom can stay in touch with her dad and 10 month old baby in Honduras. A phone call to Honduras adds up fast with the cost being around $0.50 per minute. Estephany's dad is trying to figure a way to come here for a bit by applying for a Travel Visa in Honduras and gather funds for travel expenses. Estephany very much misses her dad. Estephany and her Mom would love to see Baby Sara who is now 10 months old. Seperation from family can be heartbreaking on top of everything else. They are trying to focus on QUALITY TIME right now.
I appreciate all that everyone is doing and all the prayer and efforts that have gone into Estephany and her family. We are trying to help in any way we can to speed up the process of her dad getting his travel visa so he can get up here and the family can be together. We do not know what tomorrow brings for Estephany so our prayer is always for a better tomorrow.
UPDATE ON ESTEPHANY OCTOBER 7, 2005
Estephany was admitted on Tuesday night to the hospital due to bleeding, abdominal pains, headache and a fever. Quite a bit started going bad for her so they thought it best to do her platelets In-Patient and keep an eye on her. It was found that she also has some type of infection which they are treating. Her abdominal pains are still there and her eyes are bothering her but she says she is feeling better than she did on Tuesday and really hopes to get out of the hospital by the weekend sometime. She is so sweet and polite always. She made Myron a pretty little flower the other day as a thank you for helping her. Please keep her and her family in your prayers. Her Mom gets very worried when Estephany starts feeling bad. They understand how critical she can become at any given moment and it keeps them quite worried. They are expecting to find out if her little baby sister is a match for her. Since she is a newborn, they have had to wait and even if she is a match, they have to wait for her to turn one year old before she could donate marrow. Plus, they still do not have a "Yes" from anyone to do the transplant.
Good news is it seems they have just received news that the maker of her medicine is willing to donate some to Estephany so that is a big big burden that has been lifted!! We continue to try to raise funds to put in Estephany's medical account. This shows hospitals that the family is trying to raise funds toward transplant. We are still working on getting her father up here as well as the baby. It would be nice to have the family together. Estephany knows how serious her illness is and she wants to have her family together. She adores her mother and does not want her Mom to be worried for her.
Thank you so much for your prayers and your Happy Mail!!
UPDATE ON ESTEPHANY OCTOBER 14, 2005
Estephany wants to thank Carolyn Ulm for her wonderful donation of a shopping trip. She had so much fun! She was very appreciative and got a few very cute things to wear!!!
On the medical side, Estephany has added bruising and a few blood vessels in each of her eyes that have ruptured. One of her arms is quite bruised as well as her left foot that is not only bruised but quite swollen. Estephany has such a positive attitude though. While on the shopping trip, she was showing Sara Ulm and myself pictures of her baby sister and dad. She is very proud of her family and it was nice to see her out having fun and just being a kid. Thank you so much, Carolyn!!
UPDATE ON ESTEPHANY OCTOBER 21, 2005
Estephany was able to record a Public Service Announcement on a local spanish radio station for people to register as Bone Marrow Donor. She is very involved in her care and understanding her illness. She remains very hopeful that a hospital will accept her for transplant. I went by her house yesterday to drop some things off and although she has continued bruising and also vessels in her eyes that have ruptured, she has remained stable this past week. She was doing some arts and crafts. With her low platelet counts she has to be VERY careful not to hurt herself by bumping into things, falling or anything that could cause an internal bleed or a bleed into a joint.
Her family is still hopeful on raising funds as they can use any help offered. Estephany's Aunt has taken on quite a bit with her being a single mom of 1 year old twins. Now in the house is Estephany and her Mom, Estephany's grandmother, her Aunt Norma and the one year old twin boys. They are very thankful for your help and appreciate this beyond words. As Hurricane Wilma approaches and has just spent two days off the coast of Honduras, this of course has them nervous as well as concerned for their family in Honduras.
Thank you very much for your continued prayers and support. Our prayers are very focused on getting Estephany to a transplant while she is healthy enough to undergo transplant.
UPDATE ON ESTEPHANY NOVEMBER 1, 2005
Estephany has been doing well. She did have an ER visit the other night for bleeding but was able to come home after a transfusion. On October 29th, Estephany was baptized in her home. It was a very beautiful occasion. She is grateful for what she has been able to do so far and hopeful of things to come. She is very hopeful for transplant and plans to make the most of her life seeing all she has been through. At this time we are waiting for some very big decisions to be made regarding her transplant at one of the hospitals contacted. As soon as more info it available, it will be posted on this site. Please pray that things will be positive. Thank you for the mail being sent to Estephany. She appreciates your thoughtfulness and prayers and takes very good care of the gifts she recieves.
UPDATE NOVEMBER 21, 2005
BIG NEWS, READ ALL THE WAY THROUGH
Estephany's family has been going through quite a bit recently. The possibility of her receiving a bone marrow transplant has been causing quite a bit of nervous anxiety. First, her baby sister had to be tested (in Honduras) to see if she has Fanconi Anemia and also she was tested to see if she was a possible match for Estephany. The materials were sent to Honduras from All Children's Hospital to take blood samples and have them sent here (specially packaged) express mail. Well, that was much harder to get done than anyone imagined and when it was done, packaged and mailed, it wasn't done the way it was supposed to have been done. Therefore, the samples arrived here a little late, packaged incorrectly. All was not lost though. The samples were sent off for testing. The first tests that came back was LITTLE BABY SARAH IS A 100% MATCH FOR ESTEPHANY MEANING SHE WOULD BE A GREAT BONE MARROW DONOR NOW THAT SHE IS NEARING ONE YEAR OLD. The problem, the ability to run the test to see if she was positive for Fanconi Anemia was not able to be done due to the way the sample had been sent from Honduras SO... everything was redone. The family was, on one hand SO HAPPY that little Sarah was a perfect match but not knowing whether or not she would even be capable of donating due to carrying the Fanconi Anemia Gene, was just so much for the family to bare. Keep in mind, this test could mean they would not only be dealing with one child with this fatal illness, but two. The samples were taken and sent back up to the US. The news TODAY is that little Sarah does not have Fanconi Anemia and can be used as a donor for Estephany to receive her bone marrow transplant!!! Isn't that wonderful? Well, this is not everything yet. Estephany still does not have final word that she will be accepted as a Charity Case to the one hospital that has kept her case open. Due to us not knowing, I am not yet going to share the name of the hospital. PLEASE PRAY they will take Estephany's case for her to receive her transplant. This is not an easy case as the dad and baby were denied Traveling Visa's on November 3rd to travel to the US. Now that it has been confirmed Baby Sarah can possibly save her sister's life, this paperwork is being refiled and each of us involved are making sure we make the point clear on how necessary this is. Although Estephany cannot have her transplant at All Children's (they do not do Fanconi patient transplants), this hospital has been a tremendous part of not only her treatment but seeking futher treatment for her. Please keep in your prayers and ask those you know to pray that Estephany gets accepted for transplant, can raise the money they need for their part and for travel, and that Estephany's Dad and baby sister can get their needed temporary medical visas to come here so baby Sarah can donate marrow. This is a HUGE time for this family. There is a lot of hope as well as a lot of waiting and stress. There are so many uncertainties of what lies ahead. Best case, they are accepted, Sarah is able to travel and the transplant happens while Estephany is still strong enough to go through transplant. Worse case, they can be denied and sent back home to let this disease take its course. Please pray it does not come to this. Thank you so much for your prayers and your involvement. God bless you:)
UPDATE DECEMBER 16, 2005
Estephany has been going through some very tough times with bleeding issues, infections and lengthy hospital stays. She is quite bruised and sore, on pain medications and just really wants to feel better. At this time, she is fighting an infection that is causing her a lot of abdominal discomfort. Things are still very hopeful for her to recieve her bone marrow transplant. Two hospitals have agreed to work together using their funding, care and facilities to make her Transplant a possibility!! This is GREAT! Her baby sister, Sara, is Estephany's match and is still in Honduras.
The Katia Solomon Foundation, along with the two hospitals and a local politician are working hard on submitting requests to the US Embassy in Honduras to grant Sara and Estephany's daddy to travel here so the transplant can take place and they can be together as a family after months of seperation. Baby Sara is turning one and hasn't seen her mommy for 6 months. Estephany very much wants to see her daddy and baby sister. Her Christmas wish was that they all be together. Please pray this wish along with her transplant can come true and Estephany can soon be on a road to recovery.
UPDATE DECEMBER 20, 2005
Estephany has taken a critical turn for the worse at this moment. Please keep her in your prayers. This will be updated as more information becomes available.
UPDATE DECEMBER 22, 2005 Estephany's condition is going up and down right now. Yesterday, it appeared that she was getting quite a bit better but then last night, things started changing again with coughing up blood and having trouble breathing. Please keep her ongoing condition and her strength in your prayers. Also, today is Dad and Sister's appointment to plea for their travel visas once again. This has become more of a life or death situation with no time for "No's" now. Please pray they are given a yes and can travel here by the weekend. Estephany NEEDS to move onto transplant. If you would like to help with any the upcoming cost for travel, please use the DONATE BUTTON above. This will be greatly appreciated and keep things moving without any further delays. Estephany's Christmas Wish? To have her family together.
UPDATE ON ESTEPHANY DECEMBER 30, 2005 Estephany is awake!!! She has seen her daddy (DADDY AND BABY SISTER SARA ARRIVED ON THE 27TH) and was so happy. I have not heard what is going on with her yet today but we are praying her liver functions will improve now that she is awake and can eat on her own. Her mom was so happy to be reunited with her baby. She was only 5 months old when Estephany and her mom came here for treatment and now the baby is just over a year old. That is a long time but we are so happy they are all together right now. It is our prayer that things will improve with Estephany's health and they can move forward to transplant and get their lives back. Estephany requires a lot of prayers right now for improvements. I am so grateful to those who have passed her name on amongst your prayer chains and those of you that continue to check on her via Katia's Site and this website. With Estephany's health, things can change for the good or bad suddenly. Prayers are her best hope right now. The doctors and nurses do all they can do for Estephany and the family. We will try to get some family pictures on her site over the next couple of days. More updates coming...
UPDATE JANUARY 9, 2006 Here are the family pictures! These were taken yesterday. Estephany is doing so much better but she still has a ways to go to get ready for transplant. Currently she is eating and drinking on her own. Her bilirubin levels are too high right now to move forward with transplant but she is improving each day as she is able to eat and drink on her own. She has an amazing spirit and strength. Her family appreciates all of your prayers and help and are so happy to be back together. I know Estephany gained much needed strength by having her daddy and baby sister here.
Sara, her baby sister, will be Estephany's bone marrow donor for transplant. Just one year old and she will be such a miracle help for her big sister. Sara is very cute, bubbly and already wearing clothes the size of a two year old. She is happy and healthy. There will be more updates coming soon...
PORTILLO FAMILY TOGETHER JANUARY 9, 2006
Tampa Tribune Article January 17, 2006
With Her Hopes Dimming, Ailing Girl Gets Good News
By JULIE PACE jpace@tampatrib.com
Published: Jan 17, 2006
ST. PETERSBURG - Estephany Portillo needed a miracle.
The 10-year-old suffers from Fanconi anemia, a rare blood disease that damages the body's ability to repair its DNA. No hospitals in Estephany's native Honduras could help her, so she came to the Tampa Bay area for treatment at
All Children's Hospital in St. Petersburg. It quickly became clear to doctors that Estephany suffered from complete bone marrow failure. Without a bone marrow transplant, they said, she could die within the year.
Fanconi patients are considered high-risk; only a handful of hospitals can perform transplants. Even fewer are willing to take on the case of a foreign citizen whose family cannot afford medical bills.
Fifteen of the 16 potential hospitals denied Estephany's case.
With each rejection came worsening health for Estephany, including severe internal bleeding. In December, she was put in a medically induced coma for more than a week.
Around Christmas, as Estephany came out of the coma, her doctors heard back from Cincinnati Children's Hospital, the only one of the 16 centers considering the case.
Doctors there said yes.
The hospital considers Estephany a charity case and will perform the transplant for free. All Children's will cover the cost of her pre- and post-transplant treatment. It was news Estephany's family and doctors had hoped for but feared wouldn't come. "It seemed like something impossible because everyone else was saying no," said Estephany's mother, Lourdes Portillo. Like every step of Estephany's illness, there is still another obstacle. After the coma, Estephany's organs are too weak for the transplant. Michael Nieder, director of All Children's transplant program and one of Estephany's physicians, said it probably will be a few weeks before she is strong enough for surgery.
Estephany is regaining her strength with the help of her father, Adelmo, and 1-year-old sister, Sara. Visa and immigration restrictions forced the pair to stay in Honduras until Dec. 27, when they finally arrived with help from the office of U.S. Rep. Jim Davis, D-Tampa. Being with their family has helped rejuvenate Estephany and her mother. "I needed them to be here to survive this," Lourdes Portillo said.
Doctors at All Children's tested Sara for Fanconi, which is an inherited syndrome. Not only is she disease-free, but she is also a perfect marrow match for Estephany and will be her sister's transplant donor. Nieder said having a sibling match was the deciding factor in Cincinnati's decision to take on the charity case, which he called a rare event. "There's almost no hospital in the country that does a transplant for free," he said. "That's just the end of the story."
While Estephany's medical care is being arranged, the Portillos' needs are being met by several local Hispanic groups and the
Katia Solomon Foundation, which raises money for the families of sick children. Adelmo Portillo said it would be impossible for the family to stay together during this time without the support of the Bay area community.
The Portillos are honest with Estephany about the seriousness of her illness and the transplant, but Lourdes Portillo said she's confident her daughter will pull through. "Now she has all the cards in place," she said. "The transplant can and will save her life."
This article is also on CENTRO.com at the following link, Y el milagro llegó para Estephany for today and will come out in their paper on Friday.
UPDATE JANUARY 28, 2006
Estephany leaves for Ohio on Monday for her bone marrow transplant!!!! It has been a long long long journey but her health and the hospital is ready for her to move forward now. I don't know how many of you read the listed newspaper article on this site but the transplant is being done at Cincinnati Children's Hospital. The hospital considers Estephany a charity case and will perform the transplant for free. All Children's Hospital in St. Pete Florida will cover the cost of her pre- and post-transplant treatment. I do believe she will be in the best hands in both facilities and their hearts are all in to giving Estephany a new chance at life. The family will be responsible for their day to day expenses but the transplant and care is taken care of. I can't tell you what a big relief that was to hear!! At this time, The Katia Solomon Foundation is working on having their travel visas (approximately $200 each person) extended through June for now. We may have to extend them one more time depending on Estephany's recovery. The other thing we are working on is getting their belongings shipped to Cincinnati. The Social Workers at All Children's have lined up Angel Flights for the family to get up there. They are not only taking Estephany but also Sara, Estephany's donor. This is precious cargo! Mom and Dad will fly with them but that leaves no room for any luggage. So, it has to be shipped. We, as well as the Portillo Family, are so very grateful to see this coming together!!!
The Portillo Family is so appreciative of all that has been done for them with prayers and gifts and financial help. Donations can be made below via paypal or to the listed address, RE: ESTEPHANY PORTILLO FUND.
UPDATE FEBRUARY 1, 2006
ESTEPHANY AND HER FAMILY LEFT FROM ST. PETE TO CINCINATTI CHILDREN'S ON JANUARY 31ST.
THEY ARRIVED SAFELY AND ARE EAGER TO MOVE FORWARD WITH TRANSPLANT. UPDATES WILL CONTINUE TO BE POSTED ON A MORE REGULAR BASIS AS SHE GOES THROUGH HER TRANSPLANT PREP, TRANSPLANT AND POST TRANSPLANT CARE.
UPDATE FEBRUARY 6, 2006
Estephany's transplant date is set! February 16th!!
Today they are going to start trying to harvest bone marrow cells from little Sara. Please keep her in your prayers. As the day draws near, Estephany is doing well. She is actually discharged from the hospital right now over to Ronald McDonald House. During these next 10 days, they will need to harvest cells from Sara 2 to 3 times and Estephany will start her pre-transplant work up killing off her old bone marrow. Please check back for more updates.
UPDATE ON ESTEPHANY FEBRUARY 15, 2006
Well today should be the day before Estephany's transplant but due to some delays being able to get the marrow from baby sister Sara, I will keep you posted on Estephany's transplant date. Both girls are doing okay. Sara is taking injections to stimulate the growth of her marrow so they can get the amount needed for Estephany's transplant. Thank you so much for your prayers!
UPDATE ON ESTEPHANY FEBRUARY 23, 2006
ESTEPHANY'S TRANSPLANT IS SET FOR THIS SATURDAY, THE 25TH OF FEBRUARY!!! PLEASE KEEP HER IN YOUR PRAYERS THAT ALL GOES SMOOTHLY:)
UPDATE ON ESTEPHANY FEBRUARY 24, 2006
ESTEPHANY HAD HER TRANSPLANT ON FEBRUARY 24, 2006 AT 1:27 PM. SHE IS DOING VERY WELL!!! THANK YOU FOR ALL OF YOUR PRAYERS. NOW THEY WAIT FOR HER NEW CELLS TO START GROWING:)
UPDATE ON ESTEPHANY MARCH 7, 2006
Estephany continues to do well:)
She is hopefully going to be released to RMH soon. Her WBC count has started going up and the hope is her platelets, hemoglobin, etc. will be following. Estephany has been having a problem with mouthsores and headaches so please keep that in your prayers.
Thank you so very much for checking in with her:)
UPDATE ON ESTEPHANY MARCH 10, 2006 JUST WANTED TO ADD SOME PICTURES THAT OF ESTEPHANY AND FAMILY AT THE HOSPITAL FOLLOWING TRANSPLANT.
UPDATE ON ESTEPHANY MARCH 22, 2006
Estephany continues to do well. They aren't sure whether her marrow is engrafted yet but they will be doing a bone marrow aspirate later this week to determine if those new cells are growing. She continues to need blood and platelet transfusions but her spirits are really good:)
UPDATE ON ESTEPHANY APRIL 3, 2006
Estephany continues to improve. Her bone marrow aspirate shows she is 97% donor cells (Sara cells!). This is great news! She is engrafting well:)
The plan is to try to get her over to the Ronald McDonald House this week if things continue to improve. Her Mom and Dad are so grateful for your prayers and for following Estephany's progress.
UPDATE ON ESTEPHANY APRIL 11, 2006
Estephany is at the Ronald McDonald House and doing well:)
UPDATE ON ESTEPHANY MAY 6, 2006
Estephany is doing very well. She is all donor cells, she is needing less and less transfusions for platelets. The hope is that she can return to Tampa for followup care soon and then back to Honduras, a STRONG and HEALTHY girl!! The family is very appreciative of your prayers.
UPDATE ON ESTEPHANY JUNE 3, 2006
Estephany is looking forward to returning back to Tampa soon. She will be doing followup care back at All Children's Hospital and hopefully will be able to return home, to Honduras soon. I am sure there are many eager family members to see Estephany back home, healthy and able to play. Here are some new pictures sent recently. Estephany lost her hair due to transplant but she has a fantastic wig for now.
PICS OF ESTEPHANY AND FAMILY MAY 2006
Pictures of the Portillo Family May 2006
UPDATE ON ESTEPHANY JUNE 10, 2006
ESTEPHANY IS BACK IN TAMPA!!
Estephany and her family flew in from Cincinnati yesterday on an ANGEL FLIGHT and was welcomed by some members of the Katia Solomon Foundation. After an interview with the local Univision Reporter, the Portillo Family went to the Ronald McDonald House where they will stay over the next few days as Estephany has some followup appointments with the Transplant Team of All Children's Hospital as well as a Cardiologist. From those appointments, it will be determined how soon she can return to Honduras. Estephany looks great (as you can see in the pictures!) and is feeling very well. Her little sister Sara is doing well and growing. Lourdes and Adelmo (Estephany's Mom and Dad) are very thankful she was able to have her transplant and that she is doing so well. Estephany's Grandma and Aunt Norma (who live in Tampa) were very happy to see them again. Thank you so very much for your prayers for the Portillo Family. This has been a true miracle.
UPDATE JULY 16, 2006 Estephany has been doing well since she has been back in Florida. Her new marrow is working very well. She has had a stay in the hospital due to fevers. Please keep her and her family in your prayers that they can soon return to Honduras and continue their lives there.
UPDATE SEPTEMBER 27, 2006 Estephany is doing VERY VERY WELL!!! Her next visit to Cincinnati is November 13th and hopefully she will get a full health clearance. She had her broviac taken out a few weeks back and has just been doing wonderful! Myron went to visit them yesterday but didn't have his camera. They are still hoping to return home, to Honduras, by the end of this year. Check back for photos. Sorry for the long wait between updates but in this case, no news is GREAT news!
UPDATE NOVEMBER 18, 2006
Portillo Family in October 2006
If you look closely in the pictures, you can see how GREAT Estephany looks!!! Her skin looks beautiful, her hair has grown back nicely, she is healthy, great color and feeling very well!! Her most recent testing on her bone marrow shows all is as it should be. Estephany has even been cleared to go into public without wearing a mask. The hope is to return back to Honduras before the end of the year:)
Something else you may notice in the pictures is that you see, Estephany, her little sister Sara (who was Estephany's Marrow Donor), Mom and Dad and a NEW LITTLE BABY SISTER:) Meet Amy. Amy was born in October so not only will the family return to Honduras with Estephany healthy and ready to face a much better quality of life with her little sister Sara but they also have a new little girl to take back to meet the rest of the family back home.
I think back to how sick Estephany was back in December 2005. Transplant seemed to be a hope that was fading fast as Estephany was in a coma doing very poorly. Not only did she get well enough to have her transplant in February 2006, she is doing WONDERFUL!!!
THANK YOU SO MUCH FOR ALL OF YOUR PRAYERS!!!
UPDATE DECEMBER 18, 2006 ST. PETE TIMES NEWSPAPER ARTICLE
Given the chance to live Through a local foundation, a deathly ill girl got a life-saving transfusion and will celebrate surviving a rare disease. By KEVIN GRAHAM Published December 18, 2006
TAMPA - The little girl in pink squints, but the tear still falls.
Estephany Portillo has had more blessings than her 11-year-old heart can contain. When she can't find the words in English or her native Spanish to express how she feels, she cracks a gentle smile and cries.
She spent last Christmas in a coma, clinging to life at a St. Petersburg hospital, and in desperate need of a bone marrow transplant. Estephany had a rare, inherited blood disease called Fanconi anemia that kept her body from repairing its DNA. Her key to survival lay with her baby sister, Sara, whom doctors later deemed a 100 percent donor match.
But Sara and her father were more than 1,000 miles away in San Pedro, Honduras, desperately awaiting approval for a visa and money to join Estephany and her mother at All Children's Hospital. Before slipping into the coma, all Estephany wanted for the holidays was one last chance to see her dad and sister.
She woke up Dec. 30, 2005, three days after they arrived at her bedside.
A successful bone marrow transplant followed in February. Two weeks ago, doctors gave Estephany a nearly clean bill of health. She expects to return home to Honduras in a month and finally have a real childhood.
But first, the Katia Solomon Foundation, a Tampa nonprofit organization that provides education on blood-related diseases, like leukemia, and encourages people to enlist on a national bone marrow donation registry, wants to throw a party. They will thank her doctors, nurses and the Hispanic community that rallied around her on Wednesday at Johnny Carino's restaurant in Tampa.
The foundation adopted Estephany's family when she came to the United States last year looking for medical help at the urging of doctors in Honduras. The Portillo family first visited the Washington, D.C., area but left with no hope, just the same advice they'd received back home: Make Estephany as comfortable as possible and enjoy the time she had left.
Some Fanconi anemia patients live as old as 20 or 30. Doctors didn't expect Estephany to see her teen years.
Now they say Estephany needs only a yearly medical checkup. Neither Sara, now 2, nor their 2-month-old sister, Amy, carry the genetic trait for the disease.
"Never lose faith," is the lesson Estephany said she has learned through her ordeals. "God can make a miracle out of any person, like he did in me."
* * *
Since age 7, Estephany has suffered from Fanconi anemia, a rare genetic disorder that limits the body's ability to produce disease-fighting blood cells and causes severe internal bleeding.
"I couldn't run, I couldn't play," Estephany said. "I lost a lot of school. I felt very sick."
The disease can also cause physical deformities like smaller than normal heads and skinny or missing thumbs. Some children who carry the recessive genes are born prematurely or underweight.
At birth, Estephany weighed 4 pounds. The only way to detect the disease is through tests.
Estephany lived a relatively normal life in Honduras until four years ago, when a bout with chickenpox was the catalyst to bring out symptoms of her disease. Emergency room doctors offered little help for Estephany when her parents brought her to them bleeding from her nose and pores.
"They couldn't stop the bleeding," Lourdes Portillo, Estephany's mom, said through a translator. "They would just use cotton and send us home."
Before their medical visa to the United States expired in summer 2005, Estephany and her father visited Tampa, where Estephany's maternal grandmother and other family lived.
Estephany's aunt knew the executive director of the Katia Solomon Foundation from work. She told him about her niece, and Myron Solomon offered to see what he could do to help.
He understood what it was like to have a deathly ill child. His daughter, Katia, was diagnosed in 2002 with acute myelogenous leukemia when she was 2 years old. Solomon had struggled to find a bone marrow match for his daughter, learning medical jargon and wondering how to pay his family's bills while being out of work for nearly a year.
Through support from family, community and faith in God, Katia found a match and received a transplant. Soon after, her father established the foundation to promote awareness and offer assistance to families facing similar medical crisis.
"I get a feeling deep in my gut when I look at Estephany," Solomon said. "There are so many who lose this battle. I know what she's been through."
* * *
With the Katia Solomon Foundation's involvement, All Children's Hospital and Cincinnati Children's Hospital Medical Center teamed up to donate Estephany's medical treatment. Her mother was a homemaker in Honduras, and her father had a government job in agriculture. The family had no health insurance, and 16 U.S. hospitals had turned down their case.
Even when doctors delivered the grimmest news, Estephany's mother never lost faith.
"When those times would come around, I would tell Estephany it's just amazing how our steps are being guided," her mother said. "God has brought you here for a reason. So much is happening. It's going to be okay."
The Cincinnati medical team agreed to perform the transplant while doctors in St. Petersburg would provide Estephany's medical needs before and after.
"There was a lot of difficult moments in the beginning, but truly God has given us back Estephany," Adelmo Portillo, Estephany's dad, said in Spanish as Solomon translated.
Born on May 12, Nurse's Day in Honduras, Estephany wants to be a pediatrician. She spoke little English when she arrived in the United States, but learned quickly, often having to translate for her mother what doctors were saying. Estephany has mixed feelings about returning to Honduras, because she has to leave behind so many people who literally gave her a chance to live.
But she knows she'll be back to visit. And maybe someday, to study medicine.
Kevin Graham can be reached at 813 226-3433 or kgraham@sptimes.com.
Gift of life celebration
The Katia Solomon Foundation will hold a bone marrow transplant survivor celebration for 11-year-old Estephany Portillo on Wednesday from 5:30 p.m. to 7 p.m. at Johnny Carino's in Tampa, 1102 N Dale Mabry Highway. To learn more about the nonprofit organization and its mission, log onto www.katiasolomonfoundation.org. Click on the "Families Touched by KSF" link to see pictures of Estephany with her family and to read more about her medical treatment.
TAMPA TRIBUNE ARTICLE, DECEMBER 23, 2006
Out Of A Coma, Running With Joy
By JASON GEARY The Tampa Tribune
Published: Dec 23, 2006
TAMPA - Eleven-year-old Estephany Portillo caught a glimpse of her little sister, Sara, peeking around the corner.
Wearing red and black dresses, the sisters began zigzagging between adult partygoers with their black shoes clicking on the tile floor.
"Gotcha," Estephany said, grabbing her 2-year-old sister, who burst out in a fit of giggles.
Estephany couldn't participate in such a spirited game of chase last December. She was in a coma, battling Fanconi anemia, a rare blood disease that damages the body's ability to repair its DNA.
But a transplant of bone marrow from Sara this year made her recovery possible.
On Wednesday night, a party was held to honor the girl's successful fight against the disease at Johnny Carino's Italian restaurant on North Dale Mabry Highway.
In January, Cincinnati Children's Hospital Medical Center agreed to perform the high-risk bone marrow transplant for free. All Children's Hospital in St. Petersburg has also provided medical care for Estephany.
Her mother, Lourdes Portillo, 33, smiled watching Estephany and Sara. In her arms, she held the family's newest member, 2-month-old Amy Michelle.
Lourdes Portillo said she fought to maintain hope that Estephany would live but feared the worst.
Often bed-ridden, Estephany said she remembered being frustrated watching other children playing.
Now she can play whenever she wants. She enjoys spending time with her cousins, Pablo and Josue, who, like Sara, are 2.
"They are always running around," Estephany said. "They never get tired."
As a Honduras citizen on a temporary medical visa, Estephany wasn't eligible for health insurance. The family, including father Adelmo, 37, is living with relatives in Spring Hill and expects to return to Honduras in mid-January.
In addition to the hospitals, a local nonprofit group proved to be a vital key to securing Estephany's treatment and recovery.
The Katia Solomon Foundation seeks to increase the number of bone-marrow donors and help raise money for families unable to pay medical bills.
The foundation is named after a 6-year-old Carrollwood girl who is in remission from leukemia.
Katia's father, Myron Solomon, said he hoped Wednesday's party would raise awareness for people fighting leukemia, lymphoma and other blood-related diseases.
A major goal has been to get more people to register as donors in the National Marrow Donor Program, Solomon said.
If more people register, there is a better chance of finding the best possible match, he said.
"You can literally save a life," he said, gesturing to Sara playing with her big sister. "We have a 2-year-old girl who did it."
UPDATE FEBRUARY 8, 2007 WELL TODAY IS A DAY EVERYONE HAS BEEN LOOKING FORWARD TO!!! ESTEPHANY AND FAMILY FLEW OUT TODAY TO RETURN HOME TO HONDURAS. SHE IS LEAVING WITH A CLEAN BILL OF HEALTH AND WILL DO FOLLOW UPS VIA A DOCTOR IN HONDURAS.
Her journey has been amazing!!!! The Katia Solomon Foundation is blessed to have been a part of her journey here. Had she not come here, she would not be returning home with her family to begin the rest of her life.
Estephany is most looking forward to returning to school and seeing her family and friends she hadn't seen all this time. Estephany and her Mom left Honduras in April 2005 to come to the US to hopefully find out why Estephany was so sick. Nobody knew what her journey here would lead to but happily it took her all the way back home to be with her friends and family!
Thank you so much for your prayers and help to the Portillo Family. I am sure over time, there will be updated pictures to add. Love, Tracy Solomon
For information go to www.katiasolomonfoundation.org
Donations can be sent to:
The Katia Solomon Foundation
P.O. Box 22375
Tampa FL 33622
Reporter Jason Geary can be reached at (813) 865-1505 or jgeary@tampatrib.com
UPDATE MARCH 16, 2008
A LONG AWAITED UPDATE ON ESTEPHANY. FEBRUARY 24TH WAS 2 YEARS POST TRANSPLANT FOR ESTEPHANY. SHE IS DOING WELL. SHE IS ACTUALLY DUE TO RETURN TO CINCINNATI FOR HER 2 YEAR POST TRANSPLANT CHECK UP. ACTUALLY WE (THE KATIA SOLOMON FOUNDATION) AND CINCINNATI ARE WORKING ON THE DETAILS OF THAT. ESTEPHANY IS DOING WELL THOUGH. WHEN YOU READ OVER HER PAGE AND HOW MUCH SHE HAS BEEN THROUGH AND THE FACT SHE WAS ABLE TO EVEN RECEIVE HER TRANSPLANT AND RETURN HOME, SHE TRULY IS A WALKING MIRACLE!!! HER AND HER SISTERS ARE PLAYING AND HAPPY AND THE FAMILY IS DOING WELL. HOPEFULLY WE CAN GET SOME NEW PICTURES UP HERE SOON. WE HAVE TO FIGURE OUT AND EASIER WAY TO DEAL WITH GETTING PICTURES BACK AND FORTH BETWEEN HERE AND THERE:)
THANK YOU SO MUCH FOR YOUR CONTINUED PRAYERS AND EMAILS ASKING "HOW IS ESTEPHANY DOING????" I WILL DEFINITELY POST AN UPDATE AS SOON AS HER TRIP IS PLANNED OUT AND HOW IT GOES.
LOVE, TRACY
www.katiasolomonfoundation.org
PLEASE VISIT THE SITE AGAIN