Henry’s Future Fund

January 2025

We are going to keep this page running for the family and any future fundraising that anyone wishes to do, this will be for any equipment he may need in the future (this does not come cheap) they will also put anything else towards making memories and ticking things off his all important bucket list

As you will see from last years update, the build was completed

Thank you for all of your donations, this all went towards Henry’s side of the build which has been life changing for the family and him, he can now access the whole house and carrying him is now only to get him off the sofa into his wheelchair etc.

*Updated 19/7/24*

I just thought I would give a little update on how Henry is getting on and how the build has come along significantly since we set up the page.

Henry’s Big Build is done there is a few bits of snagging left to do but other and we have to wait for Henry’s profiling bed to be transferred into his Bedroom by the medical team on Tuesday and then his room will pretty much be complete, the hoist was fitted last week and that is an absolute changer in helping with transfers as it is becoming increasingly harder to transfer Henry from his wheelchair, onto the toilet, into the bathroom etc and it’s also taking less strain off him when constantly lifting him.

June 2025

For those of you who do not follow Henry’s Hurdles Facebook page, Henry stopped walking around 8 weeks ago now, his feet had become so painful due to increasing tightness in his calf’s, his ankles are at 20 and 10 degrees so tip toeing was getting progressively worse and it made weight bearing so hard for him that he could no longer continue with walking.

As you can imagine Henry has been absolutely heart broken about this but as usual taken it all in his stride and now it’s the new “norm” Henry has also gained around 2 stone in the last year due to not being as mobile and a change in steroids which has been the main reason for the weight gain, this has also had an impact on how he looks at himself, no matter how much we tell him how handsome or beautiful he is, he has that little niggle there that he never used to look like this, again absolutely heartbreaking.

BUT

Henry has decided he would like to go ahead with the Operation for Tendon release surgery and to be fitted with KAFFO’s which is a long leg brace and with everything crossed this will enable him to walk again, will it be a success? No one knows! how long will he walk for? Know one knows? Henry has been told that this is going to be a hard work, we will be in London for 2 weeks after the Op and he will have intense physio the day after the operation, twice a day for 2 weeks.

Throughout of all the stress of starting homeschooling in January, having builders in our house for the last 4/5 months and prior to this moving out for 12 weeks, stopping walking, frequent hospital visits and so much more, Henry has of course done this with a smile.

If you can be anything in the World- Be more Henry as if I am anything like him then I will be one very very Happy Mum.

Thank you so much to everyone who has donated and please follow Henry’s Journey on Facebook @henryshurdles.

lots of love as always xxxx

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