The story of Kylie
This is my 11 year old son Jack. He is the most endearing, loving and inspirational little guy I have ever known. I am biased I know – but if you are lucky enough to meet him, you too, will know. It took 5 years to get a diagnosis for Jack. Many tests, procedures, surgeries and educated guesses. Long nights, hospital stays, therapy, tears and smiles filled and still fills our days. The diagnosis comes in and makes no sense to anyone including the specialists. He doesn’t have another person in medical literature with the same condition. UNIQUE and other rare syndrome data bases and support groups have found nooone that we can connect with and begin to understand what road we might be travelling. It took years for me to accept that I can’t know and now don’t want to know what our future looks like. Over time he has developed hearing and vision loss, oesteopeania a liver condition and more muscle fatigue. But over time he’s also learnt to walk, talk, eat orally and grown up just like a regular little boy. He goes to dancing, he plays all sports at school and he makes a gloomy day bright for all those he comes across. He is naughty, smart, funny and sweet. He is aware he is different, weaker and smaller than his peers but he does not care. Jack is brave, Jack is happy, Jack is the only person who loves and forgives unconditionally. Jack is who I can only aspire to be and I will forever be grateful for every minute I have with him. He is just Jack and there is no one else quite like him.Â