Leo Hall, our little hero fighting everyday against a terminal Illness DMD.

Raising money to give Leo as many happy memories and opportunities whilst he's able to.

Not knowing when the use of his limbs will be taken away from him makes us want to do as much as possible whilst he can enjoy himself as full as possible.

All donations are appreciated more than imaginable and will prolong the smile on our gorgeous boys face creating memories for our whole family to remember our little hero.

Leos journey so far...

Wednesday 23rd august 2023 the day we got the news no parents should ever get. The day our life's changed. Our little boy aged 5 years old has a terminal illness theres no cure for, a disease called Duchenne Muscular Dystrophy.

Leo was a late walker, he use to bum shuffle to get to where he wanted when he was little. He didnt walk until 18 months. He was also a late talker, Leo started nursery in January 2021. I thought this would bring Leo on massively. It helped bring on words. But I was still worried as he didn't have much communication when starting full time school in september 2022. We had a meeting with Leos reception teacher for parents evening and was told Leo was very far behind with learning than the other children. I again thought this was because he struggled to communicate. Speech and language would help and leo would be talking in no time.

We never thought anything of it we just thought he was lazy because people use to say boys are lazier than girls, he will come on in his own time. We had another meeting with school for Leos 2nd parents evening and they also mentioned they think Leo may be autistic.

I booked Leo in for an appointment with our doctors. We went to our appointment on Wednesday 10th May 2023. Leos doctors asked questions, did some tests on Leo. Moving his arms and legs etc.. Leos doctors said he thinks Leo may have something more than autism.

A couple of weeks had passed and we recieved a letter with an appointment to see a paediatrician at the children's development centre. We went to our appointment on Monday 19th June 2023. The doctor asked lots of questions about Leos development now and when he was a baby. He got Leo to do some activities like build a tower with wooden blocks. Draw certain shapes. Getting up from sitting on the floor. Climbing the stairs and walking/ running up and down the corridor. After all these activities the paediatrician sat us down and also said 'this is something more than autism'. Leos muscles aren't working as they should. They said it was likely to be a neuromuscular condition. What even is this?

We was told Leo would need many tests which could include, a blood test, generics test, muscle biopsy and a mri scan. We was in pure shock.

Once we came out the appointment and got home we researched muscle conditions. The first thing that came up was dunchenne muscular dystrophy. Every single symptom for this disease was everything our little boy does/has. I remember thinking to myself no it can't be this he's always been such a healthy little boy. I had a healthy pregnancy. Normal delivery. This can't be.

A few days pasted and we recieved a letter for an appointment for Leo to have a blood test. Tuesday 27th June 2023 was Leos blood test. We was so nervous. He was so amazing, it didn't bother him in the slightest and the hospital was so good with him. We was told bloods could take up to 2 weeks and generics up to 8 weeks. We was so impatient I was ringing the hospital every couple days to see if the results had come back.

We finally recieved a phone call. Leos bloods was back. His results was showing higher than normal enzyme levels. We again searched this and again the first thing that came up was duchenne. We again got ourselves worked up and just wanted the generic results back. We always thought the worst in hope it would be something small. 8 weeks of waiting on results.

We finally got a phone call on Tuesday 22nd August 2023. It was our paediatricians secretary. Her words was ' Dr Matthews would like to see you in clinic tomorrow' my heart sank. Why so quick? Something must be wrong? To want to see us so urgent?

This must be it. His results must be back. Praying and praying for good news. Keeping everything crossed it was going to be something that would be easily fixed. We had already started physio by this point so I thought this would strengthen Leo and then he would be fine.

Wednesday 23rd August 2023. Its the day for Leos generic test results. My nerves was all over the place. My heart was pounding. I felt physically sick. We had waited too long I just wanted Leos results.

Dr Matthews sat us down and began to go over our last appointment. He went on to say Leos generic results don't look good.

His results show he has duchenne muscular dystrophy. My heart sank. I was trying so hard to be brave for our boy. Leo doesn't understand. We can't show him we are sad. We don't want him to wonder whats going on. Our life's changed suddenly. Leo has a terminal illness. A disease there is no cure for. NO CURE. We got given a huge booklet explaining duchenne muscular dystrophy as the Internet is full of false information.

2 years later and Leo is still the most happiest little boy ever living life to the fullest with his younger sisters. Leo is on daily steroids which help Leos muscles stay as strong as possible for as long as possible. Leo is now mostly wheelchair dependant when out and about. Leo now has lots of adaptations to help make life easier. Leos recently got a trike which he loves so he can now go on bike rides with his sisters. We have made so many amazing memories including Disney land Florida back in December 2024. Thank you to everyone for your donations and continued support.

So what actually is DMD?

Duchenne muscular dystrophy (DMD) is a progressive and fatal muscle-wasting disease that almost exclusively affects boys. It is caused by a lack of dystrophin, a protein that is needed to hold muscles together. Without dystrophin, all skeletal muscles begin to deteriorate, leading to paralysis, heart and lung failure, and early death. A lack of dystrophin in the brain causes behavioral and learning difficulties.

Currently there is no cure for this rare disease which affects mostly boys and very rare in girls. Life expectancy is early 30's but can be as early as teens/20's. It is 100% fatal.

Lack of dystrophin is the result of an error in the dystrophin gene, which is found on the X chromosome. As boys only have a single X chromosome, this error causes them to have Duchenne muscular dystrophy. Girls can be carriers of the genetic error, and in 1% of cases they can be sufferers.

The genetic error can be inherited from a female carrier. However, in a third of cases it is caused by a completely spontaneous genetic mutation – and therefore can happen to anyone.

The most common characteristics/symptoms are:

Progressive muscle weakness and atrophy (loss of muscle bulk) that begins in your child's legs and pelvis

Calf muscle hypertrophy (increase in muscle size) due to scar tissue build up

Difficulty climbing up stairs

Difficulty walking that gets worse over time

Frequent falls

Waddling gait (walk)

Toe walking

Hbn

Fatigue

Behavioral issues

Learning Difficulties

Delayed speech

Bum shuffling

Treatment involves regular physiotherapy / stretches. Corticosteroid medicine (steroids) has been shown to improve muscle strength however comes with many side effects.

Night / day time splints helps to prevent contractures of the Achilles heal and helps keep boys ambulatory.

Thank you so much for taking the time to read our journey so far. Thank you for everyone who is supporting us as a family. We will continue to fight no matter what life throws at us. Let's give my little boy the life he deserves. Living life to the fullest with duchenne muscular dystrophy.