DO YOU KNOW 5-YEAR-OLD JOEYS STORY?

Please take a few minutes to read, we do appreciate your time.

We have been raising money for Joey my nephew for the last 3 years now through events, friends doing challenges and people reading his story. We can’t thank you enough for all the support you all have shown, we are now asking for more help. As we know money doesn’t go far these days, especially with the ridiculous cost of aids for disabled children that Katie herself together with your donations has helped to buy to make him more comfortable, so thank you. As his disease progresses and he grows super tall, we need more equipment for him and so he can make some memories with his family.

Due to Joey’s limited time with us, Katie does everything she possibly can to make as many memories as possible that she can hold close to her heart. There are things he needs and things that will enable him to have fun days out with his family, but we desperately need your help to make this possible.

FUND RAISER. 24/10/25

There are 3 of us plus COLIN THE COW Joey’s favourite stuffed animal that will be joining us on our journey, we will be doing a very challenging walk from West to East coast, we are aiming to do this in 6 days or less. This consists of 190 miles altogether. We will be carrying all our gear with us approximately 35 to 45 kilos on our backs, sleeping wild and only stopping to eat and sleep. This is a challenge, but we only see it’s fair to earn any money that we’re asking for, and to show Joey how much we love him by doing this for him and raising the money that Joey and his family needs. He is in pain every single day, and Katie works around the clock to care for her beautiful boy and that will be what motivates us to push on.

We have a list of things that he needs and wants to make his time special and comfortable, any donation is appreciated and if you have read this far please keep reading for Joeys story and a message from his mum where it started and where he is now.

We need to raise £2000 minimum, I know this is a lot of money but everything for disabled people so expensive so please help share his story to raise awareness of Joey’s Disease and so we can help the family. Please take a few minutes to have a look at his Instagram page where we will share regular updates with our training and updates on Joey. We don’t have a lot of time so please share as much as possible.

Any equipment that Joey grows out of, no longer needs or is unable to use gets donated by Katie to other children that need this equipment.

This is Joeys story ❤️‍ it’s a long one. By his mummy Katie ♥️

Joey was born a happy healthy little boy, hit all his milestones. He wasn’t delayed apart from unassisted walking. He could walk holding on at 11months. We didn’t start to worry until we noticed his legs bending the wrong way. Then he struggled with crawling! He got tired very quickly.

From around 14months that’s when we noticed his legs bending, was very slight to start then just got worse over time. I spoke to my health visitor who came to check him, and they just said it’s normal for children not to be walking yet and if when he’s 18months then to get back in touch which is what I did. We got referred to the hospital.

About a month passed and I’d not heard anything, in this time his legs were extremely extended, and his right foot started to turn. We didn’t want to wait any longer so went privately to see an orthopaedic dr. Straight away he said something isn’t right and saw us on the NHS a week later. He did blood tests but nothing out of the ordinary. He then referred us to physio, she straight away referred us on to a paediatrician. We saw the physio again only 1 month later and the change was drastic. She had him walking around a table the 1st appointment and by the second he could hard sit up. Around 3 months later in April, we got an appointment for an MRI scan… this is when we received the news of abnormal white matter, we were given a possible diagnosis of Pelizeaus merzbacher disease (PMD) but they needed more bloods to get a proper diagnosis. They took mine, Joeys and Liams blood as they suspected it could be genetic.

2 months after the MRI on 22nd June 2022 we got a call to go straight to Manchester, that’s when we received the devastating diagnosis that Joey had Metachromatic Leukodystrophy (MLD). Our world changed forever

He then lost his ability to speak and physically declined further causing him to need supportive seating. In August he was really struggling to drink fluids, he would choke on the tiniest amount and he was struggling with food, so we went back to blending everything. This is when the decision was made to take him to hospital, where he then got the Nasogastric tube (NG) I remember the weather being so hot and I just didn’t want him getting dehydrated. From then on, he was put on a high calorie formula. That’s when the sickness began. Fast forward to now… he had the PEG operation in December and NG removed. He is having blended foods through his tube and hasn’t been sick in a long time ☺️ and he is starting to gain weight.

I post a lot of photos of Joey happy and smiling, but the actual reality is he is in pain a lot and we have had a very hard few months.

For months Joey was in extreme pain which resulted in him screaming and all I could do to comfort him was hold him while it stopped. His bladder isn’t working properly so it goes into spasm causing dystonia…. This was happening every day more than once.

Over the last 2 weeks we are finally getting on top of his bladder spasms, with a new medication, it has taken 4 weeks for it to properly take effect. Which has meant we can now reduce his diazepam, so he is able to be more alert ❤️ he does still get the pains but it is nowhere near as frequent.

I’m sharing our story to raise awareness for rare diseases, I wish I had known what to look for. I spent hours googling regression and hyperextended knee etc. I know, it probably would still have been too late. This is why Newborn screening is so incredibly important and MLD needs to be on there!!! Especially now there is a treatment available on the NHS! If they had caught this disease early enough Joey could have benefitted from the treatment, which would have slowed the devastating effects the disease has had on Joey. No more children should have to go through this horrible disease. Raising awareness is the first step to help save them.

This is the stage he is at now,

He is now fed through a tube in his stomach and all his food is blended, he’s on lots of medications that Katie has to give him through his tube multiple times a day, his vision has deteriorated and he no longer makes eye contact and he needs to be catheterised a few times a day and throughout the night, his care is around the clock.

We still find time to make memories and he loves spending time with his cousins, Aunties, uncles and grandparents and lots of fun activities with his mummy and daddy, trips to the beach and little getaways in this country when possible, farms and zoos are a favourite day out for Joey as his love for animals continues and he has had a few caterpillars and watched them grow and released the butterflies into the wild after they’ve walked on his face first, his love for animals and creatures has never wavered.

His mental age is around a toddler and he still loves songs and nursery rhymes and attends a few toddler/baby music classes which he loves but, he is still fully aware mentally and understands what we say and knows who everyone is and loves all his favourite people to sing, his Tonie box goes everywhere with him and everyone has recorded a song or a story for him to enjoy listening to, he can still tell us when he needs us or he’s not happy, and his personality is still there and hasn’t changed, even nonverbal he can communicate his needs in his own way it just takes time to figure out what he needs

Thank you to everyone who has followed his journey on here or on social media we are so grateful to you all for your support.