When I was expecting nothing seemed wrong; Maxwell was just as perfect on his scan pictures as all my other children. I didn’t have a clue what a shock his arrival would be. When he was born I began to notice things which made me wonder if something was wrong. At first I thought he was blind as he never really looked at anyone or seemed interested in things.
Nothing could have ever prepared me for finding out my child was a bit different.
Max was diagnosed at eleven months old with Global Development Delay. The first thing I wanted to do was cry. For a while I chose to ignore it. Surely they must be wrong, I thought. I kept telling myself he will prove the the professionals wrong but it hasn’t happened. We were told Max had an undiagnosed genetic condition when he turned six.
With an undiagnosed condition there are no straight forward answers and often your child’s condition can be so rare it just simply doesn’t have a name.
From when Maxwell was eleven months old we saw endless doctors, consultants, and specialists trying to find a reason why Max doesn’t do what he’s meant to do. Max is now eight and he still can’t walk or talk. He has severe and complex learning difficulties. We live each day as it comes and I am proud of everything he achieves. Max’s smile speaks a thousand words.
SWAN UK (syndromes without a name) has been a lifeline. They put you in touch with other families who totally understand our everyday battles.
Sometimes there’s a massive sense of loneliness and isolation caring for a disabled child. Being able to talk to someone about how you feel without feeling guilty is often a godsend. The family days and parent meetings give so much support to people like us that would otherwise be unavailable to access this kind of information.
Raising awareness for Max and others like him is so important to me. In December 2016 I came up with a Beauty Raffle to raise funds but also spread awareness with the power of social media. Raffles can often be boring and I wanted mine to reflect a little bit about myself. Going to a beauty salon is a release from my daily and often stressful day. I managed to get lots of salons to donate gift vouchers or products which I then made up into hampers. I sold tickets over December and the raffle was drawn on Christmas Eve. I raised £850.00 in total.
I feel so proud of my achievement and I am now working on my second fundraiser. I also involved my other children. They often find it difficult to explain to people about their brother. Doing things as a family is so important to me as Max requires a lot of my attention and I feel guilty a lot of the time that I can’t divide my time equally. SWAN UK are the voice for people like me to help towards a better future for Max and so many other children like him.
SWAN UK has shown my other children that there are lots of families like ours and they too are not alone. The days out SWAN UK provides are a good opportunity not only for myself but for my children to meet people who really understand.
Planning for a future without diagnosis is hard. All my other children will grow up and have families of their own. This will never happen for Max. I often worry about who will take care of him when I am no longer around. Things like life expectancy and care plans are also difficult to plan without a diagnosis.
SWAN UK have offered Max and myself a little bit of an extended family. Although there’s a possibility I will never get the answers I truly seek, SWAN UK will always be the support, the voice and the massive hug I need on the darkest of days.
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