JACK'S FUND

Hello and welcome to Jack Kirsopp's GoFundMe Page.

Jack is 9 years old and was born with an unknown neurological condition. He has severe complex medical needs and a life limiting condition requiring around the clock care by either his mum or his specialist trained carers. 

It has always been a dream to take Jack to Disney World in America and now we want to make this dream a reality. Due to Jack's medical condition it isnt as simple as just booking a family holiday. This is a huge task however the ultimate dream for Jack and our family. We are hoping to raise enough funds to be able to fly Jack over to America and enjoy a family holiday like any other child his age. Due to Jack's condition we will also need a specialist trained team of carers to come with us so Jack can have his extremely high level of care maintained. The organisation for all of this to become a reality is huge and we estimate it to take approximately 2 years to achieve. Jack has a life limiting condition and we have been told recently that his scoliosis is getting worse. As a family we have agreed that this is the right time to take action for Jack to have this once in a life time holiday.

We have applied to charities and made inquiries however Jack has been unsuccessful in securing a place. Due to the time frame we are working to and the uncertainty of what is around the corner, we felt as a family this was the right way forward. Due to the nature of Jacks condition and the costs involved this was not possible on our own.

Please take a moment to read a part of Jack's story below.  May I also take this opportunity to say thank you very much for donating. It is very much appriciated and means more than you could ever know. 

Jack has Supra Nuclear Palsy, Balbar Palsy,  Specialist Tracheostomy with subglottic port, Gastrostomy, Fundoplication, Hiatus hernia, Scoliosis, excess secretions, no swallow, recurrent chest infections, Global Developmental Delay, Eptopic heart beat, infrequant seizures in the past, reflux and has suffered 3 x cardiac arrests. Over night he also has oxygen desaturations and heart rate dips requiring intervention.  He is bolus fed throughout the day on a special milk feed and continous feed overnight through a pump. He is doubley incontinent. He can’t walk independently but can walk with splints in a k-walker however, can’t walk long distances without getting too tired or his legs giving way.  He has a wheelchair, special home seating, a stair lift at home, special high adjusting bath seat and high sided hospital profiling bed at home amongst other essential equipment he uses. He has some understanding and can do some makaton signing for his communication needs but can’t talk. Jack has had frequent hospital admissions and when unwell becomes very poorly fast. He also has one 2 one care at school and requires constant supervision 24-7.

Jack's last severe illness was in Feb 2013 when he caught flu and was admitted via blue light ambulance to Doncaster Royal Infirmary after showing symtoms. Jack deteriated over the next 12 hours and ended up on full life support ventilation. He needed to be paralized and sedated for this and transfered by the amazing Embrace team to Sheffield Childrens Hospital Intensive Care Unit. Due to the infection Jack's secretions got worse which caused him to deteriarate.  Jack does not have a swallow so his lungs were full of secretions which he was also aspirating.  After a few hours in hospital Jack began to start coughing up fresh blood from the infection in his lungs causing more pain, distress and tiring him out even more. After some time Jack continued to fight but was showing severe signs of weakness and his colour was changing from pale to blue infront of our eyes. I held my little boy in my arms whilst his head swelled due to his lack of breathing effort and obstruction in his lungs. Soon the blood started to clot in his lungs causing him to become severely poorly but Jack still faught as hard as he could. I was told by doctors that his lungs had consolidated and that they will try the best that they could.  As I held my boy for what I thought was the last time I said my goodbyes and that one day we would meet again. As you can imagine this still haunts me and breaks my heart every day. This however sadly is not the first time we have had to do this :( 

In time he made a  miraculous recovery!!! However, shortly after Jack  was admitted back to sheffield childrens hospital with complications and had to be reviewed again as this is not the only time Jack has become so poorly :( We trialed different tracheostomys however Jack still had many emergencies etc until Jack's fabulous ENT consultant and specialist nurse came up with a solution. Jack was fitted with a new style tracheostomy and as far as the consultant and hospitals were aware he is the only child to ever try it.  As a result Jack requires 4 hrly inner tube changes day and night and using a syringe has his windpipe cleared of anything that is trying to enter his lungs and make him severly poorly.  Over the course of approximately 5 months Jack showed signs of becoming more stable however does need an extremely high level of care across the board which is both physically and mentally exhausting requiring specialist carers to help so that I can get some much needed rest. 

He is now on prophactic antibiotics and antibiotic nebulisers to try keep his chest infections at bay however he does still catch infections frequently resulting in more antibitics and hospital admissions if needed. Jack requires suction 2-3 times per hour (more if needed) saline nebulisers if required and more frequent tracheostomy inner tube changes if his tracheostomy becomes blocked.

As you can imagine this is such a huge amount of trauma for a little boy to deal with and he has had to since the day he was born. He has had many severe illnesses and been on and off ventilators throughout his life.  To give Jack the opportunity to live his life like a 9 year old little boy should means the entire world to me and with your help I know we can make this possible. 

Thank you so much for taking time to read a part of Jack's story.  Every donation large or small means alot and without the help of family, friends and the public this wouldnt be possible. 

Kind regards,

Vicky (Jack's mum) , Jonathan (Jack's step dad) and family xxx