Zoe is a beautiful 4 year old girl from Leeds, UK. She loves to laugh and smile, and being with her parents and baby brother. She enjoys going to school with her friends and going to rebound therapy at SNAPS Yorkshire at the weekend. In April 2018 Zoe was diagnosed with Infantile Neuro Axonal Dystrophy (INAD), a rare genetic, degenerative, neurological condition. Children with the condition live until age 5-10.
We (parents, Christine Hamshere and Steve Lightfoot) are raising money to take Zoe to America to continue to participate in a clinical trial of a drug which we hope will continue to delay the progression of the condition. We are also raising money to fund research to find treatment and a cure for INAD, and will be donating to https://inadcure.org/ INADCure Foundation. Please help us to try and save Zoe from INAD.
Zoe was born in 2015 and grew up as a normally developing child until around 18 months, when it was questioned why she wasn't yet walking. She could stand at furniture but couldn't take steps without support. At first it was considered to be caused by hypermobile joints, but shortly after Zoe turned 2 it was apparent that she was developmentally behind and had lost some skills.
In January 2018 Zoe had an MRI brain scan which revealed significant brain damage, cerebellar atrophy. The part of the brain that affects balance and co-ordination, speech and swallowing had formed normally as a baby and then shrivelled.
Then began a series of tests to try and find out the cause of the atrophy. In April 2018 we received the devastating news that Zoe was diagnosed with INAD. The Great Ormond Street Hospital description is that it "is a rare inherited disorder affecting the nerve axons (which are responsible for conducting messages) in the brain and other parts of the body, causing a progressive loss of vision and of physical and mental skills....Eventually the combination of the diseased brain and physical weakness becomes too great to sustain life, and death usually occurs between the ages of five to ten years. Parents and carers will be aware of the child’s increasing frailty, and death is usually relatively peaceful and expected when the time comes."
We have been told there is no miracle cure. The NHS have been fantastic, but all they can do is support Zoe as her symptoms present. We are working hard to get involved in research worldwide to help find treatment and a cure for INAD.
Zoe is participating in a trial of a new drug in America called RT001. The trial commenced in January 2019. It was due to finish in January 2020. Fortunately the drug company have extended the trial for a further year. We have made 4 trips to America already and will need to continue to fund the trips to cover the extension of the trial. The drug does seem to be helping Zoe and we are grateful that the trial is continuing.
Since this funding page has been launched we have been able to fund the trips to America so far, and contribute to Zoe's school bus costs. We have also donated to the local charities that have been supporting us, Little Hiccups, SNAPS Yorkshire, Martin House Hospice and Leeds Mencap.
Thank you to everyone that has helped support us so far. Zoe is fighting hard against INAD. Please help us to continue to take her to America for the drug trial, and to fund further research to find treatment and a cure for Zoe. Please help us to try and save Zoe from INAD. Thank you for your support
Christine & Steve
Yorkshire Evening Post
West Leeds Despatch
- Helen Goult
- Marian Hamshere
- Charlotte Russel
- Annabelle Palmer
Rodley, Yorkshire and the Humber, United Kingdom