We are fundraising for the beautiful Isla Rose Foundation, and children all over the wolrd that have received the diagnosis of NKH. The mission of our fundraising is to help to spread awareness of this disorder, and raise enough money to find a cure.

Non-ketotic hyperglycinemia (NKH) is a rare, genetic, metabolic disorder caused by a defect in the enzyme system that breaks down the amino acid glycine, resulting in an accumulation of glycine in the body's tissues and fluids. There is a classical form of NKH and a variant form of NKH. The classical form is then further divided into severe disorder or an attenuated form (mild form).

This page was initially created by a group of 22 individuals from Kew McDonalds in Southport who completed a sponsored Snowdon climb on 30/10/19 which up to now has raised a total of £1900 with some sponsorships still to be collected! this just giving has now evolved and become the main justgiving fundraising domain for Isla and her friends.

please read Isla’s story below to help you to fully understand the importance of this cause!

Isla was born 30th September 2018. After a wonderful pregnancy with no issues. After taking her home noticed some twitches so took her to Alder Hey hospital. There we spent 7 weeks with Isla going through sedation, MRIs EEG lumbar punctures before we got the devastating diagnosis of NKH. Isla and all other NKH children not dependent of severity all need 24-hour care as they have a lot of medication and therapies they go through. This is a tough journey without the parents organizing and funding all the research.

Each day Isla has around the clock meds of 17 syringes per day. We spend 5 hours a day on developmental therapies alone. We are on 24-hour seizure watch and do not take our eyes off of her. Most kids with NKH do not have seizure control. As little as three months ago Isla was inpatient at Alder Hey for three weeks trying to stabilize her and gain seizure control.

Isla had her first birthday on the 30th September. We need your help. Please do not let us go down this road alone, orphaned with this diagnosis and no government funding.

The overall target the foundation is aiming to raise is £3million, this will bring new treatments to trial and hopefully find a cure for this insanely rare condition.

If you are from Southport or surrounding areas, we are sure you will know of Isla's parents, Sarah Steel and Mike Settle. We cannot put into words how much your support and donations mean to them, and most importantly, Isla.

Please also visit her website 💕

https://islarosefoundation.com/