Lynkin's Fight for Life
Organized by: Leigh Anders
Lynkin Reese Bell was born on 12/29/2015, to Kaylen Gaston and Mark Bell, and big brother Lukis, age 5. At 18 weeks gestation, Kaylen and Mark went to a routine sonogram appointment, and were told that they were having a baby girl. Kaylen was elated, as she had hoped all the terrible sickness in the first trimester would pay off with a sweet baby girl. As they were in the doctor's office, frantically letting family and friends know their exciting news, their doctor entered the room and broke tragic news that their baby girl had a Neural Tube Defect. Kaylen and Mark were beside themselves. Their case was forwarded to a team of specialists are Cook Children's Hospital in Fort Worth, TX. After an MRI, it was confirmed that Lynkin had encephalocele (also know as cranial bifidum) which is a rare NTD that affects less than 400 children a year, worldwide. Armed with the knowledge that only 21% of these children survive to birth, Kaylen and Mark made the decision to carry Lynkin to term and pray for the best. She was a miracle baby from the beginning.
Lynkin spent the first week of her life in Hospital, 4 of which were in NICU. During that time, they were told that Lynkin's encephalocelle contained the main vessel of her brain, and the remaining, living portion of her brain was completely abnormal. The care team said that her encephalocelle was inoperable and she would only be able to sleep, eat, and breathe for the rest of her life, with no understanding of exactly how long that might be. Devastated and broken, they took their sweet baby girl home on hospice knowing that every moment they got with her would be precious. They never lost hope that a miracle would come through. Lynkin quickly began defying the odds. She began to progress cognitively. Lynkin can hear, her eye structure is normal and she can see. She is thriving, gaining weight, and growing. At three weeks old, Kaylen sent Lynkin's medical records to a neurosurgeon in Boston for a second opinion. A week later, on January 25, 2016, Kaylen and Mark were given the joyful news that their baby girl's encephalocelle, is, in fact, operable! With this miracle, comes many expenses, though. Kaylen and Mark have been reluctant to allow anyone to raise funds for them, but a trip to Boston was something they never budgeted for. They will have to pay for airfare, hotel accommodations while they're there, which could be a 2-3 weeks. Furthermore, their bills and responsibilities back here in Texas will continue pile up on them. Mark will have to take unpaid time off of work, and Kaylen is not receiving full pay for her time off, either. If all goes as planned, the Bell's will need to be in Boston by the second week of February to prepare for Lynkin surgery. Close family and friends have decided the time was right to start this fund for Lynkin's care and spread the word about this rare disorder. Whatever you can do to help them, by donating to this fund, purchasing a t-shirt for their March of Dimes team, but most importantly, by keeping them in your prayers. Thank you all so much for helping us, help them!
- Team LRB