A VERY IMPORTANT UPDATE – ESMAY’S JOURNEY

When we first created this fundraising page in May 2025, we had only just received the devastating diagnosis of Sanfilippo Syndrome Type IIIA for our beautiful granddaughter Esmay.

At that time, we were raising money to help provide the specialist equipment she would need as her condition progressed, while also hoping to make one very special dream come true: taking Esmay to Disneyland Paris to experience the magic and make precious family memories.

Sadly, just one year on, Esmay’s condition has deteriorated much faster than we could ever have imagined.

She is now eating puréed food and is on the waiting list for a feeding tube. Her mobility has declined considerably. She can only manage a few steps with support, frequently falls and now needs specialist supports for her legs and feet. She relies on her wheelchair and specialist pushchair.

She is non-verbal and cannot tell us when she is hurting or feeling unwell. She also struggles terribly with sleep and suffers frequent illnesses.

Every day brings new challenges, and watching her lose abilities that once came so naturally is heartbreaking.

As a family, we are doing everything we can to make her life as comfortable, happy and full of love as possible.

But we still have one very special dream we want to make happen.

We desperately want to take Esmay to Disneyland Paris next year, while she is still able to experience and enjoy the magic.

Travelling with her complex needs means additional costs for accessible accommodation, transport, specialist arrangements and everything needed to keep her safe and comfortable.

We are therefore asking for your help once again.

We raised £4,000 through the kindness of people who supported our original appeal, and we will be forever grateful. But with Esmay’s needs changing so rapidly, we need to raise further funds to help make this special trip possible.

Please, if you can spare anything, no matter how small, we would be so grateful. If you cannot donate, sharing our page would mean just as much.

We don’t know what tomorrow will bring, but we do know that we want to fill the time we have with as much happiness, love and magic as possible.

Please help us make some memories that we can treasure forever.

Thank you for standing beside Esmay and our family. Your kindness means more than words can say.

Esmay’s fight against Sanfilippo Syndrome-Mucopolysaccharidosis IIIA

• Esmay was diagnosed with Sanfilippo Syndrome IllA on 15th May 2025

Esmay has experienced a lengthy medical history in her short life being diagnosed with over active thyroid auto immune disease at age 3 followed by autism, with love, persistence and hope, we have pushed until we received a final diagnosis that explained everything.

Sanfilippo Syndrome is a form of lysosomal storage diseases related to the Mucopolysaccharidosis family.

It is a genetically inherited and degenerative disease.

It is a rare disease that most have never heard of. On average, depending on the type (A, B, C, or D), there are 1 in 70,000 children diagnosed with this terminal illness. It is commonly referred to or compared to a childhood form of Alzheimer's.

She will eventually lose her ability to talk, walk, feed herself, possibly lose her hearing and experience seizures. SF IllA is the most rapidly progressing (severe) form of this disease and there is no cure. It is fatal.

Most children with Sanfilippo Syndrome do not live past their 10th birthday. Our biggest fear aside from losing her at such a young age, is watching her suffer.

To see your innocent child/Grandchild consistently continue to lose skills and abilities they once had is heart breaking. Having no way to intervene or stop the suffering is even worse.

This page was formed to help raise awareness for Esmay and other children like her and raise money to help her have the best life we can give her.

We are all fighting a battle others may never understand. Be kind to each other and be thankful for even the most minimal of positives in your life.

With your help we can get Esmay all the things she will need to support her and make the remaining of her life as comfortable as possible. She will need special car seats , bath/shower chair, padded zip up cot/bed and a reclining disabled special buggy plus many more things

we want to make sure she doesn’t suffer and has everything she needs to be as comfortable as possible.

I have watched my beautiful granddaughter rapidly decline over the last few years which is heartbreaking, Esmay is only 5 years old. I would give anything to hear her talk , laugh or even smile again , to know that I will never hear her speak again is so hard to accept.

Every parent dreams about their child's future and watching it unfold. Sanfilippo Syndrome takes that all away. Sanfilippo Syndrome is a rare, terminal, neurodegenerative disease that causes children to lose all the skills they've

gained, suffer seizures and movement disorders, experience pain and suffering, and then die. All before their parents/grandparents eyes.

if you can help at all we would appreciate it so much.

thank you.