After 10 months of tests by many specialists, finally Jack was diagnosed with a very rare genetic condition called OberKlind Danks Syndrome, of which there are less than 50 known cases in the world. None of Jacks doctors had heard of this condition, as far as I am aware he is the only one in Ireland with this diagnosis.
1st December 2016 was the date that I was advised that Jack may never walk, talk, eat or live an independent life. As a single parent of this very much wanted little boy, this was heartbreaking news. I felt as if both Jack and I had been given a life sentence, which neither of us could walk away from. I wondered if we would ever have a future to look forward to. However, every day Jack surprises me with his determination and tenacity to grow and develop despite the many obstacles he faces.
My handsome little man is now 2 years old and has come so far in the last 12 months. However, despite our best efforts he is still not walking, talking or eating. Learning to eat is a fundamental skill that most of us take for granted, not only does it open up a world of flavours and textures but is also the building blocks to using our mouths for other things such as talking.
Currently Jack is fed through a PEG tube in his stomach four times a day. That’s four times a day, Jack is attached to a machine which restricts him from moving and playing like any normal child. Because of this he needs constant supervision due to the risk in him rolling himself in the tube, wrapping it around his head, legs or neck. This is simply unsustainable and is now also restricting his development.
Jack has no association with food, has no idea what it tastes like as he refuses to allow any go into his mouth… even chocolate! When we go out to cafes, it’s so difficult to sit by and watch other children enjoying their food while Jacks sits in a highchair playing with toys. He is missing out on something that we all take for granted and enjoy so much.
Unfortunately there is no dedicated treatment available in Ireland that will teach Jack to eat by himself. This is why I need to bring him to No Tube which is an eating school in Austria in May 2018. I am confident that this two week programme will help Jack to start his journey into the world of food. Without this treatment Jack could continue to depend on a machine for life.
The basic things that we take for granted is all I want for my little son. I just want him to do what every normal child can do; walk, talk and eat for himself.
Thank you for reading Jacks story….. I hope you can support us on our journey to what will hopefully have a happy ending.
Nina xx (Jacks Mammy)
- Fiona Egan
- Caelan Grennan
- Rita Flynn
- Clodagh Donohue
- Eilish Masterson
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