Help Sophia Fight Severe Aplastic Anemia
From a coworker:
Life has a blunt way of reminding you that everything can change in a blink of an eye. One minute you are preparing for the 4th of July parade and the next minute you’re sitting in the waiting room as your daughter undergoes a bone marrow biopsy. This is a true story that is happening to my colleague’s daughter, Sophia. It all started during a routine annual checkup with the pediatrician telling her Sophia was "healthy and normal." Those are the words every parent wants to hear, and also words that are taken for granted more often than not. My colleague, Michelle, expressed concern about Sophia bruising easily. His response was general, stating that it is normal for children to have bruises on their legs, but that answer did not sit well with Michelle. With her insistence, the pediatrician agreed to order a blood test for Sophia. They were referred to a lab that was specialized in blood draws, however, this experience turned out to be a traumatic event for Sophia. The phlebotomists and nurses were not experienced in drawing from a child. Far from comforting her, they instead threatened to "hold her down and send her to the hospital" if she didn't stop crying and sit still. After EIGHT, yes EIGHT, vials of blood they claimed they didn’t have enough blood to run a CBC...really?! Again, her pediatrician said that she seemed fine and was healthy so they could table the concern for now. As a mother, Michelle knew her daughter was not okay. Besides the bruising, Sophia has never shown any other physical signs that would make her mother question her health. Quite the contrary; Sophia is a child full of energy and curiosity. Like every 5 year old. But call it mother's intuition, a gut feeling, or whatever you believe, Michelle called the pediatrician again a few weeks later and insisted on taking Sophia to the hospital or to a pediatric phlebotomist. He agreed and the results of those tests are what led us to today. Sophia has been diagnosed with Aplastic Anemia, and life as they knew it, will never be the same.
Currently Sophia undergoes weekly blood draws. She is immunosuppresed, has critical low platelets and white cell counts. I would like to ask everyone please to send both Michelle and Sophia positive thoughts and prayers. Michelle is extremely thankful for her pediatrician and the Oncologists / Hematogists & staff that currently work with her to help Sophia continue to grow and fight Aplastic Anemia. She is often asked if Aplastic Anemia is merely an iron deficiency. It is not. Aplastic Anemia is bone marrow failure. With Sophia’s critical counts, they are waiting to see what will be the next steps for her treatment, which range from a blood transfusion, bone marrow transplant, to Immunosupressive Drug Thearapy. Sophia is a fighter and her fight is also her mother's.
During these hard times, Michelle will also be incurring a tremendous amount of bills fighting this battle (i.e. co-pay prescriptions, co-pay medical bills, insurance, food, and household expenses). This site has been started to help offset these amounts, or to help lighten the financial burden for Michelle. My heart goes out to Michelle and Sophia because every child should have the opportunity to live a full, happy life. Those of us who are lucky enough to have healthy children have the opportunity to contribute to the fight many children face, including Sophia. I will ask that anyone who can donate, please do so. Even if your contribution is small, all of it helps. All funds donated will go directly to pay for Sophia’s expenses, as well as insurance, and household expenses. If you are able to help with any donation, it will be greatly appreciated.
I will continue to remain in faith that her counts will continue to show improvement without further complications. Please continue to pray as Sophia is still on so many lifesaving medications and will be so for a very long time.
I will continue to remain in faith that God will provide. As you know with this comes a great financial burden. Let go and let HIM!!
Even though our lives have never been the same, I do not regret a single day taking the risk and coming here. I wholeheartedly believe that if we were anywhere else we would have had a different outcome. The outstanding medical teams, the lifesaving granulocytes and my daughter's fighting perseverance is what has gotten us this far. My daughter is alive with nearly perfect vision in both eyes and for that alone I'm grateful.
**For those that are truly inspired by my seven year old Aplastic Warrior, please share her story either in person or online. For those that had undergone immunosuppressive therapy (ATG/Cyclosporine/Eltrombopag) where it is considered unsuccessful, don't lose hope!!***
Much love to all our #Swab4Sophia supporters.
Today Sophia will have an Allogeneic Stem Cell Transplant (using my stem cells that were collected in December) and a matched unrelated umbilical cord transplant. Thank you to the parents that donated their child's umbilical cord blood to give my daughter a second chance at life!
Please lift us up in your thoughts and prayers today! I'm so blessed to give my baby the gift of life twice.
"Everything I did for you, I did from love. You are my child, my life, my dreams for tomorrow. I will always love you and there is nothing that could ever destroy my love for you."
Since we haven't found that "perfect" match, we are taking a different route. That doesn't mean we are giving up. That doesn't mean we should stop searching. That definitely doesn't mean to stop spreading #AplasticAnemia awareness!
Today I met with such an amazing team of medical professionals. The Bone Marrow Stem Cell Transplant Program at NIH will use a different transplant procedure...specifically co-infusion of a haplomatch and cord blood stem cells from an unrelated donor. In other words, Sophia will have a transplant using a combination of my stem cells and an unrelated donor umbilical cord blood. #SaveLives #ChangeLives
In January, she was hospitalized for immunosuppressive therapy (ATG and cyclosporine) and I was told a little over a month ago that any future IST would not work.... so transplant was her only option. Problem is that due to her mixed race background finding a match is harder than winning the lottery.
We didn't lose hope and it put me into high drive of finding a match. With the help of BeTheMatch and Lifesource we have hosted several bone marrow and blood drives resulting in helping and saving a great number of lives.....I'm still praying for that one person to save Sophia's.
Tomorrow I start my unpaid FMLA but I know that God will provide. Tomorrow we start a new part of our journey. We are going to the best hospital in the US for Aplastic Anemia and for her pediatric transplant. Tomorrow is the first step to getting Sophia the treatment she needs. She's strong and she's a fighter. We will fight on! Please continue to send positive thoughts and prayers.
Hi I'm from the Philippines i would like to help..
Hi may I know where can I message Michelle Sambo? Thank you.
My blood type is o- but i take adderall. If that wont stop me from helpi g please pm me.