Our swan Felix is 21 months. He is an affectionate, happy and lovely boy and has GDD, macrocephaly, a kidney issue and low tone.
His brain scans are abnormal, but he is making slow progress. He can’t yet sit up but has learnt to roll over and use his arms, which he previously couldn’t, and he now makes sounds although has no words yet. He is our third child out of four. We have a six-year-old, a four-year-old and a six-week-old baby. We love him loads and he has taught us so much, but I do worry about the future and what happens as he gets bigger.
He is about the level of a 4/5 month old development wise and I do really hope we get beyond this stage at some point. He has a gene mutation which they think is causing his issues on a single gene on chromosome 2, but no one else has it with his symptoms so he is still ‘undiagnosed’.
Finding SWAN UK has made an enormous difference to our lives. When I’m having a bad day I think of all the other SWAN UK families and I know we will cope!
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