Parents of inspirational boy praise hospice ahead of vital appeal
PUBLISHED: 19:00 30 July 2020
The parents of a young Suffolk boy living with two complex and rare brain conditions are calling on the county to support its children’s hospice.
Tom Brown, aged 11, was born with polymicrogyria and schizencephaly, and rarely has the chance to leave his family home in Grundisburgh unless he is heading to hospital.
The conditions mean his brain did not properly develop during pregnancy and has a cleft. He also has a chronic lung condition and epilepsy and struggles to breathe at night without the help of a ventilator as his lungs are so weak.
The bubbly young boy – who requires constant care from mum Nicky, aged 46, and 49-year-old dad Tim - has spent his entire life battling the conditions but still never fails to crack a smile.
His story is made even more incredible by having celebrated his birthday with his family in April, after doctors at Great Ormond Street Hospital said he would not survive past the age of one.
Mrs Brown, who alongside Tim quit her job in 2009 to care for Tom, said: “Tom can’t swallow so is fed by a tube – but he is still such a genuinely happy boy.
“Even when he’s not at his best, he’s always smiling. I have learned so much from him these last 11 years, these children really are inspirational.
“When you think about the things that bring us down, and then remember what he has to go through and still smile – it really makes you realise.”
The family has continued to battle on throughout the coronavirus crisis, despite the constant fear that a common cold is enough to see Tom put into intensive care.
Their mental health has also suffered as a result of having to ramp up their care regimes after carers had to halt their services, but have been aided greatly by sons Ben, 17 and Luca, eight.
Mrs Brown added: “I was terrified by the virus – we normally have to take Tom to hospital every 8-10 weeks to get antibiotics for a bug in his lungs and we were adamant he would get it or we would bring it home.
“We thought about what would happen if we got it ourselves and who would be able to look after the kids, who would have the provision to look after Tom?
“We ended up enforcing our own lockdown before the government, I pulled the kids out of school and college – and for once, there are no bugs coming in the house.
“We haven’t had to take Tom to hospital for 25 weeks, which is by far the longest time in 11 years.
“We are so frightened to come out of lockdown. I just don’t know if we can as the anxiety at the thought of going shopping is just so huge.”
The family have put in more than 100 hours of care for Tom every week as a result of the lockdown, but are constantly reminded of how important the hospice is for not only them but families across the region.
And now, as East Anglia’s Children’s Hospices (EACH) launches its Star Makers campaign to help fund two more “star” nurses, Mrs Brown said all should recognise the incredible work its staff put in.
Mrs Brown added: “The symptom management team are invaluable – if something goes wrong at 2am or any hour of the night, there is no one there, but them. They are always there to help.
“The work they do helps families make the most of the time they have and build up so many incredible memories.
“What would parents of children with life-limiting children in Suffolk, Norfolk and Cambridge do if they weren’t there? They provide so much more than just the respite, families would be completely lost without them.”
As part of the campaign the hospice is asking supporters to do 100 star jumps a day over five days to raise at least £50. It is hoped this will raise £64,000, enough to provide two of the nurses helping families like the Browns.
The hospice relies on voluntary donations for the majority of its income and each year need to raise over £6 million from fundraising and £5 million in income from its shops – which were forced to close as a result of the lockdown.
Jo White, EACH Suffolk community fundraiser, said: “This is a fun campaign to get involved with over the summer holidays. “We’d love to see families and friends taking part together, maybe in relays, fancy dress or by dancing.
“Those that can’t jump can still make stars with their hands or arm.”
Those interested in taking part in the campaign can visit here.
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