Jemima Layzell Trust - Case Studies
Chloe - by her Mum, Jo Garrett
We first met the lovely Sophy and Yvette from The Jemima Layzell Trust in February 2018, whilst Chloe was still having chemo at Bristol Childrens Hospital. CBIT placed a request on our behalf for a switch button and sensory toys, to help stimulate Chloe while having treatment and motivate her to continue to develop her motor skills. The switch button allows Chloe to operate a toy independently and combined with the toys allows Chloe to interact with people, make choices and more importantly explore and play.
Devastatingly by March 2018 we had been told there where no more treatment options available to Chloe and that she was now terminally ill. She was no longer was tolerating palliative chemo, but there were still lots of travelling to and from hospital appointments and as Chloe grew she was becoming heavier to get in and out of the car. We contacted the Jemima Layzell Trust to see if they could help us with a swivel car seat that would both make things more comfortable for Chloe and the person lifting her into the car. I must admit we were a little bit worried about asking again, but the charity really encourage this, they want to help to make a difference in the lives of children who have suffered brain injuries. The car seat has made a huge difference to Chloe's comfort whilst travelling about and it is so much easier for her and us to get her in and out of the car.
In May, Chloe became seriously I'll with her gut and we spent the whole of the month in hospital and the hospice and were told to prepare ourselves. Amazingly, Chloe slowly began to recover and we set about making plans for Boo's (Chloe's) Tour 2018 and set booked a couple of short breaks away as a family to spend time together and create special, happy memories. The Jemima Layzell Trust were more than happy to come to the rescue again and helped with a short break in Cawsands. This is one of Chloe's favourite places and we have been every year since she was born, it's a very special place for us as a family. We relaxed, got out in the fresh air and played on the beach; and took lots and lots of photos.
Despite being given months to a year to live back in February 2018 and also developing Pneumatosis Coli in May 2018, incredibly Chloe is still with us and has finally started to grow and put on weight. She had outgrown her PPod and because of a slight curve developing in her spine, it was suggested that the liner for the seat should be moulded to help keep Chloe's back straight. Because this was customised to fit Chloe, the local Community Team that would normally provide Chloe's equipment were not able to fund it. Once again the Jemima Layzell Trust stepped in and provided the funding. This PPod is so important for Chloe to help correct the curve in her spine whilst it is still only slight. Further progression could lead to breathing difficulties. The PPod also gives Chloe somewhere to safely and comfortably chill out and because it is on a wheeled base, it means she can interact and feel included with her family wherever we are in the house and even the garden.
The Jemima Layzell are an amazing charity who truly care, as well as the very generous funding, they have also taken the time just to visit and chat, cuddle Chloe and lift our spirits, as they generally have us in fits of laughter. Chloe was also given VIP tickets to a local Christmas performance of Beauty and The Beast, Chloe's favourite Disney film and she so enjoyed the performance and even joined in the singing in her own little way. We can not thank this charity enough for the wonderful support they have given us as a family, the are a very special team of people, who really care.
Harry suffered a brain injury when he was shot at point-blank range by an air rifle. We donated a 'Dark Den' and sensory toys to help him relearn to use his left side of the body and improve his vision. This meant he could continue his therapy at home, in a fun way by playing with his brother.
The following year we donated a SATS Monitor so that his parents could finally get a good night's sleep, instead of lying awake, monitoring his seizures themselves.
Such progress has been made that Harry is now in line with his peers and is starting school in September. To support him with this we have given him an iPad.
Harry's dad told us "Harry still suffers with seizures often and he finds it hard to walk , but his development over these past few years has been fantastic. All of this is a small price to pay to still have him here with us today.
He struggles with his emotions and normal day-to-day routines but he is just like any other boy his age, always eating and arguing with his brother."