17 November 2018

Jack’s Story

Jack, aged 4, who featured on BBC Children in Need on Friday 16 November, suffered brain damage at birth and is not able walk, talk, sit unaided or see.  His mum Helen tells us Jack’s story and how she could not do without the help of the Rennie Grove Children’s Hospice at Home Team.

Jack at Thomley

“We still don’t know for sure what caused the brain damage.  The doctors suspect it may have been a blood clot in the placenta, but the result for Jack has been devastating.  Initially we were told that he would not live past two, but now his prognosis is to live to about 18.  He has cerebral palsy, uncontrolled epilepsy and is severely sight impaired

“He is now a very happy boy who loves music and noise but most of all his very loud big sister and his baby brother. He is still very low in tone, suffers from severe allergies and he has many seizures every day, but we are so thankful that we can enjoy our boy and as much normal family life as is possible.  

“During the dark days of screaming, the Rennie Grove Children’s Hospice at Home team were such a help and visited regularly to take over his care and give us a break.  For a while he had a naso-gastric tube fitted and it was invaluable being able to call the Rennie Grove nurses when we had problems with this – whatever the time of the day or night – helping us avoid a traumatic trip to hospital.

“The nurses have also been a great source of help and advice. I do find that getting the medication and equipment that Jack needs and co-ordinating all the various hospital appointments can be a real fight – one that I sometimes don’t have the energy for.  So to be able to turn to Rennie Grove and get their help and support with this makes such a difference.  I don’t feel I am alone with everything.  If I need them to, they will phone other organisations and healthcare professionals to support me to get Jack what he needs and they frequently come with me to hospital appointments.  This is such a help, particularly now that I have Theo too.

Read the full story here.