Help Katie to achieve her goals

Firstly id like to introduce us all Im Leigh (dad) my fiancée Elaine (mum) Marcus 15 Nathan 14 Phoebe 4 Thomas and Emily Primrose our twins 3 and our youngest Katie 1.

We are fundraising for our daughter Katie who has been diagnosed with Mitochondrial disease Leigh syndrome, the diagnosis did not come easily. Since Katie was around 4 months old we became aware that she wasn't quite the same as our other children, feeding her from birth has been a real struggle both breastfeeding and even with a bottle right up to when she had her NG tube fitted in June23' which of course has its own pit falls. She wasn't hitting her milestones at 6months and it was then that Elaine wouldn't take the 'give her time' advice we had listened to for 2 months anymore. She knew something wasn't right and continued to fight for her at every step insisting on further tests to get to the bottom of it. Fast forward 6months after numerous appointments MRI scans being poked prodded and all in-between came the diagnosis of Mitochondrial disease Leigh syndrome.

https://rarediseases.info.nih.gov/diseases/3671/mitochondrial-dna-associated-leigh-syndrome.

She has brain damage as a result to the front loble of her brain she has cortical visual impairment (CVI) cortical hearing loss, epilepsy with numerous seizures everyday, respiratory issues, unsafe swallow (peg soon to be fitted to replace NGtube) compromised immune system, unable to sit up stand walk and will not likely talk and most devastating of all a short life expectancy.

We will use your funding to try to prolong Katie's life for as long as possible by taking part in trials in the UK and abroad and ideally we want the option to take Katie abroad if the NHS no longer feel treating her is viable such as similar cases that have happend with Mitochondrial disease patients in very recent times, we also want to make as many memories as we can with her, treat her like the absolute superstar she is and take her to experience as many things as possible to see and feel the world shes part of. Thank you for taking the time to read and any support you can give.

Money raised goes towards medical equipment Inc oxygen machine for at home and on the go. Hospital grade cot bed. Hyperbaric chamber treatment and hopefully purchase. Numerous medical grade sensory items. We are still looking for suitable trials for Katie to be part of both here in the Uk and abroad.

Our situation is compounded by the fact I (Dad) am unable to work due to 2slipped disks in my back and Elaine is Katie's full time carer so we are entirely dependent on benifits. We also have to deal with back problems with a diagnosis of scoliosis for our eldest son, our other teen has crones as does phoebe which is a recent finding. No joke the hospital feels like a second home to us at times.

So far your donations have made a real difference to Katie she's now fully kitted out with her wheelchair with clamps ect and she has some sensory toys and went towards the costs of a visit to Paighton Devon where she got to feel the sand between her toes.

Again thank you so much for any support you can give.

The Fox Family