Family 'overwhelmed' by support for Telford toddler with rare genetic disorder causing hundreds of seizures a day
The family of a Telford toddler with a rare genetic disorder causing hundreds of daily seizures say they have been "overwhelmed" by the outpouring of support and donations.
Brandon Taylor is raising funds for his 19-month-old daughter Remi who has Dup15q Syndrome - a condition that causes epilepsy, autism, severe low muscle tone, and global developmental delay.
Donate towards the fundraiser on GoFundMe
Despite having hundreds of seizures a day, Remi continues to fight bravely and work hard through therapies to reach important milestones such as sitting and communicating.
Dup15q Syndrome affects roughly 1 in 10,000 births worldwide each year. Brandon is planning to run the Rome Marathon in March next year, with 50 per cent of the funds raised going towards Remi's private physiotherapy, hydrotherapy, and occupational therapy. The remaining half will be donated to the Epilepsy Society, funding research and care for those affected by epilepsy.
So far, more than £1,900 has been raised - around 75 per cent of the £2,600 target (as of November 4).
On Sunday (November 2), when the fundraiser surpassed £1,000, Brandon said: "I’m actually overwhelmed with all the incredible donations we’ve received so far and the amazing messages of support for little Remi.
"I am genuinely so grateful for every single penny you’ve all given - It will all make such a huge difference. Let’s keep this momentum going. Thank you."
At just five months old, Remi was diagnosed with the rare neurodevelopmental disorder - a duplication of a section of her chromosome 15.
Because of this, she faces many challenges, including complex epilepsy, autism, global developmental delay, and severe hypotonia - low muscle tone.
Remi's epilepsy first appeared at just five-months-old, beginning with infantile spasms. Since then, she has tried numerous anti-epileptic drugs (AEDs), but none have managed to fully control her seizures, which have changed and worsened as she's grown.
However, a ketogenic diet has been the most effective treatment so far and has reduced the most aggressive types.
Between 70 to 90 per cent of children with Dup15q go on to meet the criteria for Autism Spectrum Disorder (ASD).
Remi’s hypotonia is also particularly severe, making milestones such as sitting, crawling, and walking much harder to achieve.
The toddler has worked tirelessly with her NHS physiotherapists to build strength and coordination, and her parents are hopeful that she will soon reach the incredible milestone of sitting independently.
Remi's fine motor skills and communication abilities are also affected. Babbling, feeding, and coordination are daily challenges, but Brandon said she faces each one with "courage, resilience, and her beautiful smile".
"Your support means the world to us and helps give Remi the best possible chance at a brighter, stronger future," he added.
You can donate here.
