Jack Powell has been through a lot in his short life, but his family can take comfort in knowing they’re supported by Jigsaw, Cumbria’s Children’s Hospice.
Jack, who is two and from Appleby, was born with several life-threatening conditions, including a hole in his heart, long segmented tracheal stenosis and severe left bronchial malacia, conditions which cause breathing difficulties and a defect with an artery in his heart.
Clare, Jack’s mum explains: “This basically means Jack’s airways were too small for his body and his left pulmonary artery was wrapped around his trachea, or airway. This coupled with the heart conditions became quite complicated.
“He had major surgery when he was a baby to widen his airways which helped but not enough and he had to live on a ventilator. Being long-term ventilated, the best options for Jack was to have a tracheostomy put in. He has also had three stents placed and numerous ballooning procedures.”
When he was 20 months old he had a procedure which enabled him to start weaning off his ventilator and he now managed to breath on his own during the day. Although this was a huge step forward for Jack and the rest of the family, he still requires high levels of care and support.
Jack has attended Jigsaw for several months and although being nervous at first, he has grown to love attending the hospice for his regular respite visits, allowing him to flourish into a more confident little boy.
“What has been great is how patient the team has been with him,” Clare adds.
“He can struggle with new people, particularly people in uniforms, as he’s gone through a lot of pain in his little life so far. Everything at Jigsaw has been done in Jack’s time.
“There’s so much to do around Jigsaw for Jack and they know if he needs mum and dad then that’s OK. The staff have been really accommodating to his needs.
“When he stays over, they couldn’t do any more for him, they treat him like a little prince. The first time we were able to stay in the flat at the hospice and his carer was able to go along to support the stay too.
“There’s so much that Jack likes, such as the sensory room, the inflatable tent, the smart screens, the bath and bedrooms. The facilities are incredible, everything is so accessible.”
Jack’s most recent operation has given him a new sense of freedom and can now walk around independently.
“He is a happy, playful little boy,” Clare says.
“He loves colourful lights and toys but isn’t particularly attached to one thing, although his whole world revolves around biscuits. He loves his big brother Daniel very much, wherever Daniel is Jack wants to be. He loves to get out to the park, particularly the swings and will play with the football with his dad and brother too.
“He’s not too fond of meeting new people and takes a long time to build up trust so often just wants to be close to mum, dad and Daniel. Although loves to wave and make people smile from a distance.”
