Brylin was born at 35 weeks suffering complications from a maternal placental abruption. Due to the complications including lack of oxygen and blood flow to the brain ,Brylin was treated in Shands NICU and diagnosed with Hypoxic Ischemic Encephalopathy, and later diagnosed with Mild Right Spastic Hemiplegic Cerebral Palsy- meaning it affects her right side only. The fight and drive this girl has had since day 1 is so amazing . She pushes through any challenge, and approaches her Therapies head on and with determination . She has 6 siblings who root her on daily, and parents and grandparents and great grandparents who love her and support her wholeheartedly, and strive to give her the best quality of life possible.
Our Stem Cell journey started when we realized Brylins falls were getting rather concerning , with little noninvasive options left to try, after talking with her Physical Medicine and Rehabilitation Doctor we tossed around the possibility of Botox injections to combat the spasticity. Botox is generally used in CP patients to relax the muscle and allow proper movement and stretch to the designated area. botox is a repetitive and routine treatment option with many side affects . We went through with scheduling the evaluation with her neurologist to discuss Brylins potential for botox injections. after the appointment, we began researching the side affects and risks associated. we prayed hard for clarity on the situation and as the appointment approached we soundly brought ourselves to find peace in not going through with the injections. it was a very unsettling feeling , so without hesitation we canceled the botox appointment! Upon canceling this appointment and furthering our research , we discovered we were expecting another little baby into our family!
Which led us to the less invasive treatment before Spinal surgery, Stem Cell Therapy. Stem Cell therapy is a regenerative Treatment option. The Blessing of another beautiful baby was just that, a Blessing. We looked clearly at our blessing at accepted what the Lord was giving us, the missing puzzle piece to our large family, and a solution to our dilemma to treatment options . With the arrival of Brylins younger sibling approaching we decided to do umbilical cord blood and tissue banking . Our plan was to use Sibling donor through Duke Children's Hospitals Stem Cell Trial for HIE/CP Children. We started the Process during Birth when We took our cord blood kit to the Hospital with us for our scheduled Caesaren , We followed every step to a T, as did the attending nurses and doctors. The lab sent a carrier for our collection and all was good with our precious babies Umbilical cord blood and tissue ... until a few months later when Duke contacted us back requesting a copy of the lab report from our collection , later telling us that somehow we did not have enough cord blood collected ( quantity required is per size of the child recipient ). unbeknownst to us, we needed an exact volume amount for Brylins weight/age. Unfortunately this was not information that we had prior to starting out on cord banking. there was no way to continue going through with the trial through Duke as they only offer this one option for the trial (sibling donor). with what felt like a punch in the gut, a spiral backwards emotionally , feeling like we had failed , messed up and wasted time and efforts, we halted our journey because of the unknown situation presented to us . There are no other clinics in the US that offer Sibling cord blood donations. Our only options to use our babies collected cord blood and tissue for Brylins stem cell treatment would be to go to one of the many facilities outside of the country , India , Panama , Thailand , Mexico , and to name a few. This wasn't an option we were comfortable with nor was it very feasible for our 6 other children including our newest baby. That travel would be difficult with a family our size and to such destinations. While we navigated through our feelings of the situation, we discussed the options so many times we felt we were at a stand still. The thought of autologous (self derived- meaning they would extract it from Brylins bone marrow) stem cell transplant seemed like an extra step that would be difficult for a 7 year old the endure. However , it was slowly becoming our most ideal solution to figuring out this treatment option for Brylin. With continued research and conversations with other families who have come together in the Stem Cell For HIE/CP Facebook group, we found a few connections to recommended Doctors in the States that offer autologous cells to Pediatric CP patients, we decided to go with a specialist in Colorado. With our First evaluation appointment via phone to a clinic in Colorado, we knew that we had found the right place for us, for Brylin. We spoke with a doctor who listened, heard and understood our situation, our journey and our hope ! It was a Peaceful conversation that brought answers, a highlight to our day, a much needed change of direction and a final goal and final decision . Now with the help of family, friends, community and ultimately LOVE, we will get our goals accomplished , for Brylin ! Although the unknowns , the journey will lead us to where we need to be, and where she needs to be.
"Despite my disabilities , I'm as valuable as anybody else to the world ."
"Kids with Cerebral Palsy are still kids, nothing more, nothing less!"
