Please help our terminally sick daughter Isla

*update*

we just want to thank everyone from the bottom of our hearts as we have now reached our target to pay for the extension on our home ❤️

we originally thought we would need to raise this through the go fund me but with the £25k grant and the support from TikTok we have now reached this

anything from this point will be going towards creating the best memories with isla for the time we have left with her .

we really can’t thank everyone enough for their kindness ! The bio below will be updated this week as a few things have changed with isla and ourselves. Again we can’t thank everyone enough xxx

we are desperately reaching out as a family for help for our terminally sick daughter Isla

In august this year our 6 year old daughter was diagnosed with a disease called niemann pick disease type c and our worlds have been shattered to find out that we only have a maximum of 6 years left with her and that’s if we can get her on the correct medication. We are as a family absolutely devastated and we are still trying to come to terms with this .

We want to give you a brief insight into what isla has already been through and what is needed in the future . We just found out last week from Islas specialist that we need to plan for the worst and basically Islas being cared for at home in 6-12 months .

Isla Started life life any other child , hitting all of her milestones. She could walk , talk , play, feed herself , just really do everything you would expect. Then she started loosing these skills . Fast forward to now isla is 6 and is unable to talk , walk without help , is on the list for a peg as she can no longer eat due to chocking . Islas also has huge seizures which are getting worse and we are trying to control with medication .

Basically this disease is quickly taking over our daughters brain and taking everything away from us.

we are urgently asking for help to create ground floor living area so isla can have a bedroom and a walk in shower, but also somewhere we and her cares can make her life as comfortable as possible. Currently we are carrying her all around the house but as isla quickly regresses we want to give her the best quality of life.

Social OT have granted us £25k to make these adaptations but the whole build including changing and washing facilities , wheel chair accessibility , hoists and everything else comes to around £65k leaving us no choice but to ask for help.

Isla is such an amazing beautiful happy girl and no matter what life throws at her she powers through like the true warrior princess she is.

i can’t tell you how this news of Islas life expectancy has hit us . It doesn’t feel real but we have to keep going and we have to live each day like it’s her last . She gives us the strength we need each day just from her smiles and we just want to give her the best quality of life we possibly can.

we will be doing lots of fundraising events from this page and we will keep you updated on our journey .

Thank you so much for taking your time to read our story