Photography by Baby Bee Photography
Jakob (ADA SCID) with his parents Andrea and Kamil
The following article was reprinted with permission from the Facebook page of Jakob, an ADA SCID patient who has been waiting several years for the opportunity to enter the ADA SCID gene therapy clinical trial. His parents’ feelings of anticipation, joy, and a touch of anxiety are evident in this announcement written by his mother, Andrea.
When Jakob got diagnosed our hearts broke in so many pieces. We thought we would never recover, we felt defeated when we learned we might lose him at age 2. So little by little we started picking up the pieces, trying to see the bright side while fighting with God.
Every day, every moment was an excuse to celebrate his life, his existence; filling our hearts with hope and the words of comfort from friends and family. The efforts to raise funds would have never been possible without the help of each one of you and even today many still join our activities and awareness campaigns, to this Thank you ☺️
We have prayed for a miracle to come and today finally we have received The Call. Jakob has been on a patient list that belongs to UCLA in California for Gene therapy or a stem cell transplant by Dr. Donald Kohn that would fix his bone marrow, giving him a new life, an opportunity to enjoy freely like a regular child.
Today the miracle has come and we want you all to celebrate with us the news, because without all of you, it would have been impossible. For the future No more needless, IVIG pokes, or fear to lose him due to an infection or cold. The opportunity to break free from the bubble, a future, school, friends and like in the book In My Magical Bubble “puddles of mud”
Jakob has started to climb the hardest track of this mountain and as scary as it sounds, we are also carrying all our energy, thoughts and faith with positive vibes. The summit is closer day by day and we know our Little Fighter would make it to show you all that every single child deserves a life opportunity, no matter their medical condition, race, faith, ethnicity, or where they are from.
Don’t miss an issue of our Quarterly Newsletter. Sign up now.