Max's Story: Donate to Rainbow Trust Children's Charity
Your donations are urgently needed to help us provide support for more families with a seriously ill child.
Rainbow Trust Children’s Charity supports families who have a child with a life-threatening or terminal illness. When Max was four months old, his parents Claire and Dale were concerned that he was not hitting milestones and did not seem to be developing like other children.
Following many tests, at two years old, Max was eventually 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.
‘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 the 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.
Throughout Max’s diagnoses, Claire and Dale have strived to make sure Eva, Max’s younger sister, now thirteen, has as normal life as possible.
‘We always strive to make her life normal. We go above 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 are currently supported by Family Support Worker Ellen.
Ellen provides sibling support for Eva, giving her some time just for her.
‘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!’
'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's mum
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.’
We need your help and generosity to reach more families with a seriously ill child.
With your help Family Support Workers like Ellen can make the challenges that families living with childhood illness face that bit more manageable.
Please donate today to help us support more seriously ill children and their families just like Max’s.