Remembering Jasmine by helping others

This year our lives were shattered when our 7 year old daughter Jasmine had her first seizure out of nowhere on 10th April. The seizures unfortunately, and heart wrenchingly, never stopped.

After 3 long weeks in an induced coma, and every test possible carried out by the Bristol Children's Hospital Paediatrics Intensive Care Unit (PICU), the genetics testing showed Jasmine had a very rare form of Mitochondrial Disease, specifically DMN1L of which there are only 35 other cases documented globally. In short mitochondrial disease is a genetic disorder that impairs the body's ability to produce energy, affecting multiple organs, in Jasmine specifically her brain.

Following the diagnosis the specialists attempted to wake Jasmine, however due to the continued seizures which were resistant to all antiseizure medication (Status Epilepticus), she suffered severe brain damage, effecting her entire brain. After 8 weeks in PICU we moved Jasmine to the Shooting Stars Hospice in Guildford where she passed away peacefully on the 10th June with her family around her.

Before this Jasmine was a force to be reckoned with, always moving - be it dancing in the kitchen, BSL performances, raiding the house of all food or asking "Mummy what's next?". She always lived her life as her true self, something we're trying to learn from her, but it will take some time. We miss her beautiful sunshine every day.

While we start to find our feet, adjusting to our new future as a family of 3, we know that we need to remember and talk about Jasmine, our "Minnie". 

During these 8 weeks we had the support of 2 amazing charities which we had no idea existed.

Firstly ending up in Bristol PICU for 6 weeks meant we had no where to stay and were over 100 miles from home. Ronald McDonald House UK support families with children in hospital by providing families with free, comfortable accommodation. Their support relieved not only a financial burden, but gave us a constant, reliable home from home at a traumatic time. Their staff could not do more for us and were very kind to our entire family.

The second charity is Shooting Star Children's Hospice who support children with life-limiting conditions as well as their bereaved families. 
In a time of pure sadness and devastation the staff at Shooting Star Hospice were our guides and carers. They ensured Jasmine was comfortable, nothing was too much right up to her last breath and after. Jackson acquired a "big sister" in the form of Lisa our family support worker, and we had their kind hands to lead the way through a journey we had never expected to experience. Believe it or not they allowed us to smile and make memories in our final days as a family of 4. We are eternally grateful to ALL the staff there.

With that in mind we ask that you help us to give back to these charities. All money donated will go directly to the charities, split 50/50.

Help us remember Jasmine by helping those families that come after us needing the support that we could not have gone without.