Parents fundraising mission after son’s extremely rare condition

Sophie Ritson and Dean Deagle have been organising several fundraisers to support Crawford House where we supported them while their son, Freddie, was seriously ill in hospital.

Two parents from Cramlington, Northumberland, are on a fundraising mission for The Sick Children’s Trust, the charity that supported them when their son was hospitalised with a rare condition.

Sophie Ritson and Dean Deagle have been organising several fundraisers, including taking part in the Great North Run, with their friends and family to raise vital funds for The Sick Children’s Trust. They want to thank the charity for its support when their son, Freddie Deagle, was seriously ill at the Royal Victoria Infirmary (RIV) in Newcastle.

Five-year-old Freddie had been suffering from a bad cough and breathing problems for several weeks, which doctors initially diagnosed as viral and chest infections. However, when his eyes started hurting and his lips became swollen and blistered, he was transferred to the RVI for specialist treatment. He was then diagnosed with mycoplasma pneumonia, a serious lung infection which developed into a rare skin reaction called Stevenson Johnson Syndrome. This caused Freddie to come out in a painful rash and blisters across his body including in his mouth, throat and tongue. Stevenson Johnson Syndrome being caused by mycoplasma pneumonia is extremely rare with only a one in five million chance of occurring.

Freddie spent two weeks in the intensive care unit where he was sedated, ventilated, given a high level of pain relief and medication to combat the symptoms of the Stevenson Johnson Syndrome. The condition is incredibly painful and prevented Freddie from breathing and eating by himself. There are no treatments for the syndrome itself, only management of the symptoms it causes so Freddie had to be closely monitored while his body recovered and healed.

Throughout his time in Newcastle Sophie and Dean were supported by The Sick Children’s Trust and its ‘Home from Home’ Crawford House. The charity provided them with a free place to stay on the hospital site so they could always be by Freddie’s side, instead of driving the hour round trip from their home every day. To thank the charity for its support they have been raising money through several events to sponsor a room at Crawford House in Freddie’s name, enabling the charity to help even more families in the future, raising over £5,000 so far. Sophie said:

“Seeing Freddie so poorly and in so much pain was absolutely horrific. For a long time they couldn’t work out exactly what was causing Freddie to come out in so many blisters so while it was extremely difficult to see him completely sedated, it was a relief that he was finally getting the treatment he needed.

“Crawford House was amazing, providing everything we needed to look after ourselves so we could be strong for Freddie when he needed us most. Freddie’s three-month-old baby brother Alfie was able to stay with us as well, with his older brother Joshua coming to stay at weekends. The ‘Home from Home’ kept us together as a family as much as possible. Being so close to the hospital really reassured us that if Freddie needed us at any moment we could get straight back to his side.

“Freddie has been doing well since leaving hospital and is slowly getting back to his normal, cheeky self. We still have check-ups at the RVI as we’re unsure what the long-term damage might be, especially to his lungs, but right now he is back playing with his brothers.

“We’re aiming to raise £10,000 to sponsor the room we stayed in at Crawford House for a whole year so other families can stay close to their seriously ill children. During Freddie’s time on the intensive care unit I realised just how much we needed Crawford House. The ‘Home from Home’ was priceless and we want to help other families who find themselves in a similar situation to us.”

The Sick Children’s Trust does not charge families to stay in any of its ten ‘Homes from Home’, however it does cost the charity £40 a night to support a family, and that is only rising with the cost-of-living crisis. Community Fundraising Officer, Connor Haley, said:

“We’re so pleased we could support Sophie and Dean so they could always be close to Freddie’s side during this incredibly difficult time. Freddie faced so many unknowns with his very rare condition, so it is wonderful to hear he is now on the mend at home.

“Our ‘Homes from Home’ are so much more than just a place for families to stay. Our friendly, caring staff provide vital support to families when they need it most while alleviating financial worries and some of the additional stresses that come from having a seriously ill child in hospital. As a charity we rely on the generosity of our supporters and fundraisers, like Sophie and Dean, to make sure we can continue supporting families while their children are seriously ill in hospital. We cannot thank them enough for all their support.”

More information about Sophie and Dean’s fundraising can be found on their Just Giving page

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