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Willow, 4, was diagnosed with PIK3CA Related Overgrowth Syndrome when she was just four months old – a condition that’s so rare most people have to Google it.
For Willow, this means that her vascular and lymphatic systems are affected. So, to help improve Willow’s condition, she has been receiving support from our specialist Lymphoedema Service at St Oswald’s Hospice since she was a baby.
Kath Clark, Matron of Day Services said:
“Willow was the smallest baby our team had ever treated for Lymphoedema. We’ve loved being able to help her and her family over the past four years and we will continue to support her throughout her life – so she’s truly part of our St Oswald’s family.”
Willow’s Lymphoedema affects both legs and causes swelling, so as she’s grown doing simple things like climbing stairs or walking can be difficult.
According to Mum, Karen and Dad, Kris, Willow just “gets on with it”, but for their family it’s been quite the adjustment.
Karen explained:
“Willow’s condition started at birth. She has to be treated for her Lymphoedema, which is worst in her left leg, and also chronic pain – and has even had part of her bowel removed due to her vascular complications.”
Karen continued:
“I know it sounds awful, but sometimes I forget what it’s like to be a normal family. Hospital and hospice appointments are literally our week-to-week now.
“Because of the daily medication Willow is on, she has a lowered immune system, so she’s constantly at risk of getting poorly. You have to be on your guard 24/7 thinking about her.
“My son, Bentley who’s 13, has adapted well to our situation, considering everything. Willow obviously gets a lot of the attention – so it must be hard for him.
“Obviously, I’d want all of my children to be healthy, but I wouldn’t change Willow for the world – as a family we got picked to have her this way.
“Even though it’s difficult, we have found a way to cope – but without the support from St Oswald’s Hospice we would have struggled a lot more.”
When a consultant recommended that Willow attend St Oswald’s Hospice for Lymphoedema treatment, Karen was hesitant as she thought it was just an “end of life clinic”.
But now, she is in no doubt that the help she’s received from the Lymphoedema Service has changed Willow’s life.
She said:
“The treatment we receive from the Lymphoedema team is probably the most vital. It has such a big impact on Willow – and our family.
“If we hadn’t been referred to the team when she was a baby, I can’t imagine where we’d be at now. I genuinely think she would have such a poor quality of life.”
As it was an overwhelming time for Karen and her family, Kath Clark, our Matron of Day Services and Jill Lisle, our Senior Sister in Day Services, arranged training sessions so that Karen could carry out Willow’s bandaging of her legs at home.
Karen said:
“Kath and Jill taught me how to do the compression wrapping of Willow’s legs. They even contacted the company who make the adult compression stockings and they agreed to make some smaller stockings for Willow.
“They’re so cute! The company said it was the first time they’d had to make ones that small. Each time she gets a new set from the Hospice, I put them away as a keepsake.”
You might expect Willow to feel nervous about a visit to St Oswald’s Hospice, but Karen laughed with a cheeky smile and said – “it’s quite the opposite!”
“If Willow comes to see Kath and Jill, she gets really excited! It would be a completely different story if I said we’re going to hospital, she would have a meltdown.”
When Willow visits the Lymphoedema Service now to have her legs assessed – Karen said she is always greeted with “a lovely welcome”.
She added:
“The lady at reception always runs up to Willow and has sweets ready – it’s lovely.
“Then she’s straight over to the fish tank with her hot chocolate. We always feel totally at ease when coming for her appointments.
“During Willow’s visits, the team will inspect her legs and give general advice to me. Willow suffers from cellulitis as part of her condition too, so the team check that it’s under control.
“They even wrote a letter to Willow’s GP, asking that she be prescribed penicillin daily – which has helped to keep her cellulitis at bay.”
Karen is rightly very proud of Willow and the progress she makes – despite everything she goes through on a daily basis.
She added:
“Willow is the most resilient child I’ve ever met – she can be so poorly on the inside and still look so normal and happy.”
A message to others…
Karen has a message for other families who may be worried about coming to St Oswald’s Hospice for Lymphoedema treatment:
“Don’t be afraid to ask your doctor about the Lymphoedema Service – it’s totally transformed our lives.
“I know without St Oswald’s Hospice, especially the support we’ve received from Kath and Jill – we wouldn’t be where we are now. We owe them so much.”
We couldn’t provide the specialist care that we do for our patients, children and young adults without our fantastic supporters.
If you’d like to make a donation so we can continue to provide ‘Quality time for everyone’, please make a donation here.
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