Luke's Champions

Hello Everyone! My name is Kristal Milo Ross and this is Luke Davis my cousin who is the 4th son of my 1st cousin Theresa Davis and her husband Lew Davis. Theresa is like a sister to me and after reading this I hope you can open up your heart for this family.  Luke was born on February 2nd, 2016 and was diagnosed with Apert Syndrome. Apert Syndrome is a rare genetic disorder that occurs when there is a mutation in the FGFR2 gene. There is no rhyme or reason for this mutation, at least one that has not been discovered yet. This mutation will cause the openings in the babies skull, called sutures, to close prematurely. This makes it very difficult for the brain to grow as it needs to and could be life threatening.


Another effect of Apert Syndrome is what is called syndactyly, which is the condition of having some or all of the fingers or toes wholly or partly united. This may also result in bone fusion in the fingers and/or toes and also missing joints and/or bones.


Luke's condition presented with his coronal suture completely fused and his fingers and toes webbed. His thumbs are free, but twisted and will need surgically repaired. We are unsure about any bone fusion and will not know until they begin preparations to separate his fingers and toes. In addition to anomalies in his skull, hands, and feet Luke also has a shallow cleft palet.  This has made it impossible for him to nurse and to only drink from a special nipple called a Haberman. These bottles can be quite pricy for the family to purchase. The surgery to correct this will be when he is approximately 1 year old.


With everything else that Luke has going on he also has a narrow nasal passages making it difficult to breathe especially during feedings.  Because of his difficulties with breathing Luke has already gone through two nasal dialations.  His first one was during his 19 day stay in the NICU and the second one occured on March 25th.  In attempts of making the second nasal dialation more successful his surgeon placed stents in Luke's nose to try to make the surgery more successful. 


As you can guess this was an extremely uncomfortable procedure and long few days with the stents in. While it was hopeful that this surgery would help Luke breathe easier, it is not guaranteed to last. For now though, he is breathing very well!


Luke has 3 AMAZING big brothers! Connor - 11, Gabriel - 7, and Liam - 6, they are constantly checking on him, making sure he has everything that he needs, and are also very worried about him. They love him so much and will go out of their way to give him a kiss goodbye when they go to school or when it is time for one of Luke's doctors appointments or surgeries.


We all had a scare the second week of April when Luke was showing increased intracranial pressure. He had a scheduled test done which was to get a baseline on how everything was looking in that respect, but that quickly turned into an unscheduled surgery. The testing revealed signs of atrophy to his optic nerves in both eyes which were key indicators of increased pressure. The surgery took place and went very well. They cut a zig-zag pattern from ear to ear across the crown of his head. From there, they cut out the fusion of his coronal suture. This is only a temporary fix, but an obviously necessary one. Luke's skull will heal closed and hopefully will last long enough for his scheduled cranial surgery in October of this year(2016).


My cousin Theresa will not be able to return to work so that she can care for Luke full time. Between raising Luke, his 3 older brothers, and all of the  doctor appointments and surgeries that he will require over the years, it will be a long and hard road for Luke and his family. This is why I decided to set up this GoFundMe page. They are a fantastic family and need help to ease the financial burden of all of the lost income incurred and will continue for many years. Her husband Lew works full time, but he needs to be with his family during these surgeries. While he was able to work some things out with his company, it just does not cover the lost income.


Luke will never have a normal life, at least what is normal for those of us without this genetic disorder. However, with your help and support we can all do what we can to make sure that he has his parents by his side every step of the way. After all, each step that he takes will pave the path of a champion.