Sofia Gardella is a 5 year old girl who we helped to raise money for in this year’s Purslow Memorial Tournament. She suffers from an extremely rare genetic condition called Congenital Amegakaryocytic Thrombocytopeniav (CAMT). This is characterised by a low blood platelet count and a complete lack bone marrow cells. This causes immune system complications that can lead to other serious illnesses.
In her short life, Sofia has battled a variety of illnesses as a result including graft versus host disease, spleen removal, glandular fever, vertebral crush fractures, two bone marrow transplants, smooth muscle tumours of the liver, and autoimmune haemolytic anaemia. She has spent a lot of her younger years at Sheffield Children’s Hospital where the specialist there have cared for her incredibly well.
When we first met Sofia, her illness meant she was immune suppressed which made her more vulnerable to illness, virus’ and infections. This stopped her from attending school regularly, managing half a day where she could. This was something she adored as Sofia loves to socialise with her peers! This was a big step for both Sofia and her family, who have all been incredibly brave and positive throughout the whole of Sofia’s illness.
While they handle it very well and with ease, Sofia’s illness has put huge pressure on the whole family, and understandably. Her mum, Claire Gardella, has had to have long periods absent from work as a special needs teaching assistant to care for Sofia, while dad Fabio continues to work, despite being overcome with worry 24/7.
Their other daughter Sienna, aged 8, often stays at her Grandmas while Fabio and Claire endure lengthy stints at the hospital with Sofia, which has not been ideal, especially when Sienna finds change hard to adjust to.
They have also had to abandon the idea of family holiday’s abroad due to Sofia’s condition being so unpredictable. Plus, the cost of Sofia’s travel insurance to get away has stung the family in the past and wasn’t feasible with just one parent working.
“It’s a very difficult time for us as a family. There is so much uncertainty daily and because we may need to go to hospital at any point, planning things to do with the kids feels impossible.”Claire Gardella, Sofia’s mum.
How We Helped
In May, we ran our annual Purslow Memorial Football Tournament. This is a chance to raise vital funds for local people that require facilities, equipment, services or funding that is not normally provided by the authorities. We do this in memory of late Tamworth lady, Anne-Marie Purslow who sadly lost her battle with cancer in September 2018 at the age of just 36.
This year, we committed to splitting the funds raised on the day between Sofia and Claire, a 35 year old with stage 4 Melanoma. The money raised would then go towards helping Sofia and her family enjoy their first family holiday abroad to Disneyland Paris!
The tournament was a huge success with 20 teams from the local community participating in what was a competitive day of football. The local community came out in force too. There were around 300 attendees throughout the day all giving generously to support our charity of choice, Claire and Sofia.
From sponsorship, team entry, donations, the raffle and the auction, HUHO managed to raise a huge £8400 pounds for both Sofia and Claire. Money that goes a long way to making a difference to the lives of these incredible women.
As a thank you for PCS’ help in the run-up to the tournament and on the day, we asked PCS to surprise Sofia with her cheque. Jamie Lake, PCS Commercial Director and Marketing Lead Charlotte Batey were delighted to deliver the cheque for £4200 to Sofia at her school recently, with her dad, Fabio and sister Sienna.
To be a part of an organisation that supports such a fantastic charity is amazing but to see the impact that our events have on other people’s lives is the icing on the cake.
Sofia has obviously had a lot of trouble with her health over the years but to play a part in sending her on a magical trip to Disney and experience being a princess for a day is an overwhelming achievement and I am looking forward to more of the same next year.
Commercial Director at Pure Cloud Solutions
Since The Tournament
After the football tournament, the tumours on Sofia’s liver had grown considerably and she was on around 15 medications to manage the effects of this. However, at her latest MRI scan, these had shown to be static meaning they had not grown or shrunk. The doctors believe this is due to one of the new medicines they administered.
While it’s great news on this front, Sofia does now have a new complication. At a routine eye test, doctors discovered a build-up of fluid around her optic nerve. Further investigation via CT & MRI scans show that this is likely linked to prolonged steroid use. This is dangerous as it could affect her vision and cause her to be blind.
The hospital is keeping a close eye on this and she is having weekly lumbar punctures to drain the fluid and keep on top of it. They are currently debating placing a shunt in her head to drain the fluid into her tummy. But this is an invasive procedure that would require brain surgery.
Despite her health complications, Sofia is very well in herself and now attends school full time. She loves spending time with her friends and is enjoying being a little girl amidst the hospital trips and illnesses.
A Dream Holiday
Sofia and her family used the money that we raised to enjoy their first family holiday abroad to Euro Disney. They drove there for a long weekend with both girls, hoping to give them an experience they would never forget.
They met princesses, enjoyed the rides and forgot all about hospitals and illness. Sofia was booked into the Princess for a Day experience but cried because she wanted to go on the rides instead. Their smiles beamed from ear to ear and the whole family had the most amazing time. HUHO is proud to have been able to support Sofia and the Gardella’s to have such a once in a lifetime experience together.
“We had an amazing time in Euro Disney. It was magical and the girls did not stop smiling the whole time. I cried happy tears when we watched the fireworks over the Disney castle as it was something I never thought we could do as a family.”
“We are so grateful to be given this wonderful opportunity from HUHO and we thank you all from the bottom of our hearts for giving us this magical experience together as a family.”Claire Gardella, Sofia’s mum.
There are still things that Sofia will have to overcome, but the road ahead is most certainly a bright one. As the family take one day at a time, Sofia gets stronger and more confident, taking on the world with her happy heart and beaming smile. Go Sofia – you can do anything!