Thank youGenuinely in awe of how beautiful Bowen’s quilt is. Knowing that there are people out there who are willing to put their time, effort and incredible skill to such amazing use to create something so beautiful for our very special boy is something we will truly treasure forever. We cannot thank you all enough, but Bowen’s smile goes to show just how much he loves the quilt!
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BiographyDuring pregnancy, we were told that although he was otherwise healthy, Bowen would have an upper limb difference and as a family we started to prepare for how we could help him overcome any obstacles this may present for him. But until birth, we were completely unaware of just how unique he was going to be. Bowen was born with a previously undiagnosed 10p15.1p12.1 chromosome deletion which makes him one of a kind; Bowen’s is the largest deletion of the 10p chromosome recorded on the global database and he faces life-long complex medical conditions and developmental differences.
It is obvious to anyone that meets Bowen that he requires additional care for things that most of us take for granted with our little ones - he is fed via a mic-key into his stomach using a machine, he wears hearing aids as he has severe hearing loss and he has to be physically supported with everything as he has musculoskeletal weaknesses meaning he is unable to roll over, sit up , crawl or stand like most babies his age.
Yet this is just the tip of the iceberg as since birth, Bowen has been under the care of multiple paediatric consultants across three hospitals and has already had to undergo two operations to widen his airway and place his mic-key feeding button. He awaits an eye operation to lift his eyelids as he is unable to open his eyes fully meaning his vision is impaired. He is being assessed for cochlear implants and is soon to have grommets fitted, and he awaits surgery for undescended testicles. He only has one kidney making him susceptible to urinary tract problems. His heart and airways are monitored regularly by specialists, and he requires dietician, speech and language therapy, occupational therapy and physiotherapist assessments and support. We do not know if he will ever be able to walk, talk or how severe his learning disabilities will be.
We live each day as it comes and although we love him to the moon & back again, helping Bowen not just survive but thrive, is an emotional, physical and financial rollercoaster. Unfortunately we have learnt that there isn’t the level of support available for working families of babies with disabilities that we hoped would be in place to act as a safety net to catch us when the unimaginable happened. No parents expect to be faced with fighting for their child to be able to access the simple things in life like being able to go to nursery, take swimming lessons or sit safely in a highchair, but for us these are just some of the many struggles we face on a daily basis
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