We are the Worby Family, David, Kerry, Rio, Emily, Jed and Zac - this is our five month old son Zac’s story. Zac was born in March 2014 and his first 10 days went well, until he became unwell on the day of David’s Mother’s funeral. He became floppy and was having trouble gaining weight. We were admitted to our local hospital and were then transferred to Great Ormond Street intensive care; we are now at the London Evelina Hospital of which we have spent most of Zac’s life in intensive care.
Zac has RIRCD (reversible infantile respiratory chain deficiency) mitochondria myopathy. This is a very rare genetic disease with only 6 recorded cases in the world. It is a metabolic disease causing the battery cells (mitochondria) not to work properly. It causes a severe muscle weakness and this has triggered significant problems to feeding, swallowing and essentially his breathing muscles. Zac is now a long term tracheostomy vented baby requiring life support and intensive care. Due his metabolic issues this affects his ability to fight infection only having half the energy source that ‘we’ have to survive. The uniqueness of his condition is if we can keep him well and supported this should reverse in 3-5 years, the danger is we could lose him due to infection before this.
We unfortunately have a huge amount of experience having faced battles before with our Girls from previous marriages. David has Rio now 20 who as an undiagnosed condition but likely Cerebral Palsy and Autism coupled with many emotional related conditions such as ADHD, ODD and often unprovoked violent behaviour.
David also has a son Jed aged nine.
Em’s now 16 has Dravet syndrome this is a life limiting epilepsy disorder coupled with extreme autism. Em’s has no speech or self-help skills, requires 24 hour one two one care. Em’s spent several times in Intensive care; we nearly lost her last year due to a 5 days status seizure.
David and I met 20 years ago whilst working and got together 5 years ago and have had to fight relentlessly for our Girls. It has been an unremitting few months and we have the endless challenge of getting our son home safely. We are approaching winter and he needs to get home before the season of flu and colds outbreak.
As parents of children that have struggled this has been the hardest thing in the world with the potential to give him the life he deserves. The unbelievable emotion and pressure has been unforgiving as well as the financial strain of living in London near the Hospital and carrying on the bills at ‘home’. Zac was a planned baby and with much research testing and stress we were told we had the same chance as any other healthy couple as we wanted to avoid any further children having to go through a disability. It has devastated us and Zac will now require 24 hour nursing care, with home life support.
We are asking people to help raise funds in any way they can. These funds will be used to purchase a specially adapted pushchair which will accommodate his ventilator, oxygen, suction machine and emergency equipment. This will enable us to take him out once a day for a walk and give him a better quality of life. It will also help make adaptions to our home and for specialised play equipment to help him get stronger and develop. The quicker we can get things in place before winter the quicker they will signs us fit to go home.
Thank you for your support.
With love the Worby’s xx
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