A three-year-old from Barnet who underwent a kidney transplant has been able to recover in comfort, thanks to a children’s disability charity which provided a specialist seat to keep her fully supported.
Leia Morsbach was born with a rare form of mitochondrial disease, a genetic disorder which means her cells have difficulty producing energy. As a result she has developmental delays, epilepsy, needs to be fed by tube, is deaf and has severe muscle weakness, similar to Cerebral Palsy, which means she is unable to sit without support, walk or talk.
Until a kidney transplant at Great Ormond Street Hospital a few months ago Leia also had kidney disease, but the donation of a kidney from her dad, Tom, happily means that this is no longer the case. However, with only a specialist structured functional seat like a high chair at home that she wouldn’t be able to tolerate, it meant she would have needed to stay in bed while she continued to recuperate – until they turned to Newlife the Charity for Disabled Children to provide a specialist supportive seat called a P Pod.
The national charity provides a range of services for disabled children and their families, including grants for equipment and emergency equipment loans for when a family is in crisis or don’t have time to wait. They also offer Play Therapy Pod loans so all children can experience the joy of play, and a nurse helpline for support on a range of issue from benefits to condition specific advice.
Tom said: “Leia was initially recovering in hospital for six weeks, but when she came home she needed somewhere she could continue her recovery in comfort, and the P Pod from Newlife allowed her to sleep and chill while being fully supported and still be with us. It was a great help.
“Although her recovery was the initial reason we needed the P Pod, it has now become a key piece in our home. The seat itself is easy to move anywhere we need it and even into the garden, so she can always be with us and we can keep an eye on her, or even safely leave her for a few minute if we need to.
“The new kidney is working amazingly well for Leia and she loves to watch cartoons from the P Pod. It also means she’s easily accessible to her one-year-old brother, Robin, who likes to get as close to her as he can and bring her things which is really sweet.
“Having the P Pod is great and we are really please she has what she has!”
Kamaljit Dulai, Newlife Child and Family Support Manager, said: “We are so glad we could help Leia and her family. At Newlife we know that having the right equipment at the right time is so important, and being able to sit and rest in comfort and safety makes a huge difference – not just for recovery after major surgery – but to improve a child’s everyday quality of life.
“At Newlife we are here to help families of disabled and terminally ill children where the lack of the right equipment means they are in pain, unsafe, unable to do things others take for granted or denied the opportunity to reach their potential, trapped unnecessarily in hospital, or even in a crisis situation. New application forms mean receiving help from us is now easier than ever too.”
To discover more about how Newlife can help, click here or call the Newlife Nurse helpline on 0800 902 0095 between 10.00am and 4.30pm, free from mobiles and landlines, Monday to Friday, with an answerphone facility outside of normal hours.