Henry’s Big Build and Future Fund

Camchuairt na hÉireann in Aid of Henry`s Big Build & Future Fund

Eleven friends from Aylesham and the surrounding area are set for an epic charity tour, cycling around Ireland which is about 1000 miles in nine days. We will be raising money for Henry`s Big Build and Future Fund.

Henry Lanaway; a young lad from the area has been diagnosed with a rare genetic condition Duchenne Muscular Dystrophy, a life limiting progressive muscle wasting disease. We hope to support Henry's parents in providing much needed help during this difficult time.

The team includes three father/son pairs; Carl & Mark Moses; Keith (Bingo) & Linford House and Dale & Rylan House, who will be joined by Dave Austen, Cathal Bartolo, Mark Tonks, Glen Dobson and Steve Richards. The team will be supported by their van driver Eric Norton.

We hope to raise over £4000 to help Henry's parents future proof their house . We are due to set off from Belfast on 19th June 2024.

Please read below a little bit about Henry, written by his Mum Natalie.

Our Beautiful Boy Henry was diagnosed with Duchenne Muscular Dystrophy when he was 5 years old.

Henry is now 9 years old and suffers with a rare genetic condition called Duchenne Muscular Dystrophy, which is a life limiting progressive muscle wasting disease.

Due to improvements in Medicine with trials and gene therapy some boys are now living into there 30’s but sadly we are still losing boys in the Duchenne community at around the age of 14 or younger due to complications from Duchenne.

Henry has slowed down significantly over the last few months and is only now walking with the aid of us, boys with Duchenne will normally be full time wheelchair users by the age of 10-14 but in rare cases this can be from birth or slightly later.

As the disease progresses he will also start to lose upper body function and then the disease will start to affect his heart and lungs.

We are also currently undergoing renovations on the house to make it accessible for Henry’s future which as you can imagine involves a lot of cost, Henry will be having a wet room attached to his bedroom, he will also have a H track hoist that will take him from his wet room into his bedroom, we have also included low threshold bifold doors in his bedroom which will lead straight into the garden so Henry can access the garden and fresh air from his bed if that is required in the future.

Although Henry has to deal with all of this on a daily basis along with taking daily medication, frequent hospital visits to London and generally losing the ability to do all the things he once could and loved,he does it all with the biggest smile.

I had a conversation with him just before Christmas and had to tell him that he will need to use his wheelchair full time one day and he said “that’s ok mum, walking is boring anyway” and that’s why he is the most inspirational boy and he teaches me daily how to maintain strength, resilience and generally just enjoy life.

Due to the cost of living crisis the cost of materials have spiralled and the quote which we was originally given when we brought the bungalow 2 years ago for Henry’s future needs has tripled in price.

We had a builder who was due to complete the works on the extension for Henry’s future needs but sadly we paid him a lot of money which was well over the original quote and his work did not comply with building regulations so we had to pay out again to rectify this, this whole ordeal has been heartbreaking to say the least.

If you can help at all with the cost of Henry’s Big Build and Future Fund for all equipment he will need then please donate if you can.

We are eternally grateful forever and Always.

The Lanaway Family

XxxX