Ria Heap JHT 30/30
- By JHT
At the age of three our seemingly healthy daughter, Jasmin, underwent some tests as we were concerned she may have been hearing impaired or slightly delayed in her learning. We were sure it was nothing that couldn’t be fixed with love and time, but how wrong we were…….The results were life changing for my husband and I, but life limiting for Jasmin. She was diagnosed with a rare genetic degenerative disease called Sanfilippo.
Our lively, vocal little girl was going to lose her ability to walk, talk, eat orally – she would develop epilepsy, suffer pneumonias, dystonia and a host of other vile things. We were told Jazzy would not live into her teenage years. I simply cannot describe how devastated, shocked and distraught we were. To add insult to injury just 6 days later Jazzy had her first seizure.
Our doorstep was littered with letters with NHS postmarks from an array of services of which we had never heard and had no clue as to what they did. This was the start of learning complex care routines to keep Jasmin safe and at home with us – it was exhausting, relentless and frightening but also a true labour of love for our beautiful daughter.
We were referred to the James Hopkins Trust but were in firm denial we needed their services. We were matched with a wonderful nurse who became our saviour. Our nurse educated herself on Jazzy’s rare condition and educated us in what it all meant, helping us to make sense of all the medical jargon.
We had respite care every week at our home, which was a life saver for us. I would also take Jazzy to Kites Corner, the home of James Hopkins Trust, for her to enjoy the wonderful facilities there, the sensory garden, soft play room, sensory room. It was great for me to meet other parents. Parents are mostly self-taught and being able to share information and my fears was priceless.
Over the next 9 years Jasmin deteriorated, as expected, with the Sanfilippo disease. Her epilepsy only got bigger and more frequent, at 6 she lost all of the small amount of vocabulary that she had, at 7 she spent two weeks on life support in ICU in Birmingham due to pneumonia – when she came home she was so weak she was unable to eat or walk so came home with a wheelchair and feeding tube in her tummy, she also required oxygen to help her breathe – there were so many practical and emotional changes to come to terms with. Despite our fear and sadness about the future, James Hopkins Trust were still there supporting us practically and emotionally, helping us to enjoy precious moments with Jasmin and make a life time of memories.
On 1st March 2011 my husband and I held Jasmin as she took her last breath.
James Hopkins trust has been with me through every step of our journey with our darling daughter. They have helped me live rather than exist, thanks to the treasure trove of memories created during the time that they supported us as a family.
On 23rd March 2015 I was very proud to be employed by James Hopkins Trust as a fundraiser. I adore every aspect of working at JHT, it’s a personal labour of love. I want to raise enough money to ensure that all of the families have the vital nursing respite care that they require and that I had throughout Jasmin’s life.