Max's Story

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Meet Max and his family

Claire and Dale are parents to sixteen-year-old Max, and thirteen-year-old Eva. When Max was four months old, Claire and Dale were concerned that he was not hitting milestones and did not seem to be developing like other children. After bringing his six months check forward, doctors diagnosed Max with low muscle tone. Despite still progressing very slowly, Max’s test results all came back as normal. It wasn’t until he was two years old that he was diagnosed with epilepsy, and then at five years old with kidney disease. During testing linked to his kidney disease, doctors also diagnosed Max with mitochondrial disease at the age of seven.

‘When we got the diagnosis of mitochondrial disease, this wasn’t the worrying part. It was the fact we were told that his kidneys were failing which turned our lives upside down. Within a year, he had to go on dialysis, which he stayed on for four years.’

Throughout this time, Claire described bouts of hospital stays, regular blood tests and emergency visits.

‘It was a horrendous four years, and it was very tough on the family.’

In 2019 Max had a kidney transplant, and Claire describes the impact this has made on Max’s life.

‘The transplant has changed his life incredibly. He is on half he medication he was, he’s not being sick or he’s not tired and he hasn’t got high blood pressure. Although it isn’t a cure, it’s a much better way of life and we are very grateful.’

Although Max’s condition has improved since the transplant, having mitochondrial disease effects his life daily. The disease effects his organs, he can’t walk, he can’t talk or eat, and he needs adult supervision 24/7.

‘We take each day as we do. We live in the moment.’

Although having a seriously ill child brings with it immense challenges, Claire explained the positive impact this has had on their mindsets:

‘Our lives have completely changed, and we’re now sixteen years down the line. But Max is not just his mitochondrial disease, he is Max. It’s taught us to enjoy life and live it to the fullest. But when you are living with a seriously ill child, there is always a little dark cloud – you have good days but some days you’re brough back down to reality that you’re on borrowed time. I’d hate to look back and have regrets. Max is enjoying himself and he is happy.’

Claire, Max and Eva's mum

Throughout Max’s diagnoses, Claire and Dale have strived to make sure Eva, now thirteen, has as normal life as possible.

‘We always strive to make her life normal. We go over and beyond to make it feel normal and we have good conversations about it now that she’s older. Eva doesn’t see Max as sick; she sees him as a perk! We don’t have to queue when we go anywhere, we can park closer! We work so hard to make her life normal, and ensure she’s involved in things she needs to be and doesn’t miss out.’

Max and his family self-referred to Rainbow Trust after they heard about the support a friend was receiving at the same time, back in 2014. Over the years they have had a few different Family Support Workers, with support changing as Max’s condition changed and the family’s needs evolved. They have been supported by Family Support Worker Ellen since July 2022.

‘At the moment, we have support mainly for Eva. There are adults always coming for Max, but it’s really nice for Eva to have a friend that’s just for her. Ellen and Eva go for ice cream, play UNO, go to the park – they don’t necessarily talk about Max, but it’s more about her having time for just her and someone to go out with. It makes her feel more grown up!’

In the past, their Family Support Worker would read stories to Max or sit with Max and Eva, which would allow Claire to pop out to the shops or take the dog out. They have also received transport support to the hospital for Max’s appointments.

‘In lockdown, Rainbow Trust was amazing. We had online support which was fantastic, and our Family Support Worker even did our shopping as we couldn’t go out. It was a lifesaver!’

Claire says the biggest difference having support from Rainbow Trust has been ‘knowing someone is there if we need it.’

‘For Eva, it’s so important. It’s knowing she has something to look forward to – it makes a very cheery time knowing Ellen is coming and just knowing we have that support.’

Claire’s message to other parents thinking of reaching out for Rainbow Trust’s support would be:

‘Asking for help is really hard, but definitely reach out. It doesn’t need to be a dark place for you to ask. We use it for sibling support – it just opens so many other doors. Having the extra pair of hands can give you that bit of respite.’
‘It can be hard, but once they’re there in your life, you’d wish you’d done it sooner!’

Please help us reach more seriously ill children like Max by donating today.

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Continued support for a family for as long as they need us

Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone. We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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