My name is Hayley and I’m mum to Maddie (12), Jay (8) and my little swan Harrison (3).
Harrison will be three in July. He loves Ed Sheeran, lights and the MTV music channel. He adores his siblings and is a very happy little man.
Harrison has just mastered getting into the sitting position from being laid down and he’s trying so hard to pull up onto an all-fours position.
Harrison has Global Developmental Delay meaning that his development is at the stage of a five-month- old. He is non-verbal, has hypotonia, hyperextension, optic nerve atrophy and CVI meaning he is visually impaired and he can’t communicate at all at the minute. He has Sensory processing disorder unusual features and he has autistic traits. He’s had an abnormal EEG, so far a normal MRI and regular genetic testing has found nothing. We are hoping Harrison’s going to be put forward for 100,000 Genomes Project.
I realised there was a problem with Harrison when he was six to seven months but he didn’t get seen by a paediatrician until he was 10 months old and then it was like a massive whirlwind of doctors, tests and therapies.
Having a child with an undiagnosed condition has been a massive life change.
We have had to move so our house can be adapted and my other two children have had to change schools. We have no idea what Harrison’s future holds, if he will ever be able to say mum or dad or if he will walk or even crawl. It’s so difficult trying to explain to people what is wrong with Harrison when we don’t even know ourselves.
My eight-year-old son has started experiencing anxiety because he is so concerned about Harrison’s wellbeing that he’s started to worry too much. My partner and I are tired as we both still work and the appointments can become very draining.
In the beginning it was like a grieving process, it was so difficult to understand why I felt that way, the why me why him why us question was on repeat. Now I have so much pride in Harrison. He’s shown me new ways of looking at life and I’m more accepting of everyone and situations now. He is a little inspiration and is very loved by everyone who meets him.
If I could change something it would be that genetic testing was more readily available and that we could have an idea of how Harrison’s life will pan out in the future.
If Harrison had a diagnosis my children and family would find it easier. I would be able to give him the right support and get him the right support for his condition. I wouldn’t change one thing about my boy but being able to say he has ‘ …’ would be better than listing his massive amount of symptoms.
Despite this I have Harrison has shown masses of determination and he’s my absolute idol and he’s only three.
I feel positive about the future in that the amount of support that is out there has made things easier to handle and talking to people in similar situations has helped me come to terms with everything we have had to cope with. I found SWAN UK through another special needs mum who was giving me help and support.
As a member of SWAN UK there is someone on hand to talk to, listen and give advice. Their events also give me quality time with my family.
To me SWAN UK means support help kindness, and a hand to hold. To anyone who finds themselves with an undiagnosed child, if you feel alone, lost or just looking for comfort, reassurance and support, SWAN UK is for you. We as a family can’t thank them enough for everything they do not just for us but for everyone.
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