Thanks for taking the time to visit William’s Tree of Hope #BeMoreWilliam original JustGiving page!

Thanks to everyone who has donated so far!

The current fundraiser and activities are now on William’s "Hundreds of Miles for Hundreds of Smiles" fundraising page:

https://justgiving.com/fundraising/hom4hos

Again, thanks to everyone who has donated so far! So far, donations have gone towards, in no particular order:

The garden wetpour (£6k)

A hi-lo bath (£12k)

Therapy (£2k)

An OT sensory toy from Smirthwaite (circa £300)

A cup to try to help with drinking independence (sadly, it didn’t work) (£60)

The urZone safe travel bed (£6k)

Towards adapting our solar to give us grid independence for his equipment and warmth in a power cut (£960)

Swim spa (we paid £20k, fundraised £4k)

Off-road wheelchair (funded by other charities—thank you—Jack O'Donnell Foundation and NHS voucher)

Trike (supported by local Masons and Children Today)

Running buggy (£600, solely funded from this page)

Please note, we say “gone towards” because we have part-funded some of this ourselves, or other charities have helped—such as Wipe Away Those Tears (£4k towards the bath) and the Aaron Lewis Foundation (£3k towards the urZone bed).

William's BACK STORY (brief version):

William has had over 50-60 ambulance rides in his short life for epileptic seizures or respiratory issues, and he takes nebulizers and twice-daily medications to stay alive. He’s such a brave boy and always bounces back, so we started a hashtag due to his bravery:

#BeMoreWilliam

If the world was more like William, it would be a better place!

He won a highly commended Child of Courage award at the Pride of Essex 2019 awards.

You can donate on the page or by text:

Text: Bemorewilliam 5 to 70085 to donate £5.

This costs £5 plus a standard rate message. Alternatively, you can opt to give any whole amount up to £20. Thanks!

William's Facebook blog:

https://www.facebook.com/emsjg/

Detailed Back History:

William was born in 2016, and it was quickly apparent he had significant health issues. However, at the time, there was no reason to believe he was neurologically impaired. We have always been a couple who raise funds for charities, but we never had the realization that we were about to become a family in significant need (a hard transition to face).

From conception, William suffered seizures and respiratory issues. However, we didn’t realize that some of his odd behaviors/movements were seizures until he had a 3.5-hour-long tonic-clonic convulsive seizure, including stopping breathing, at 7.5 months old. This happened on London Marathon day in 2017—an event we watch as both of us (his parents) are runners.

Investigations started, and a monthly (or more frequent) cycle began of life-threatening seizures, ambulance blue-light rides, high-dependency stays, and hours spent getting lines in and bloods.

Every time he gets ill, it triggers seizures. He often stops breathing. He has refractory epilepsy (uncontrollable with medicines).

Along the way, he picked up a life-limiting condition called Pseudomonas aeruginosa (a superbug), which lives in his lungs and attacks his respiratory system.

On June 2017, on Daddy’s first Father’s Day, William suffered 12 hours of cluster seizures, using up all rescue medicine options and requiring intubation onto life support to stop the seizures.

During this week in St. Mary’s PICU, William was diagnosed at 9 months old with a neuro-genetic condition called Angelman syndrome. This is a chromosome 15 deletion (impairment for other individuals) that leaves him facing a life of therapy to learn to walk, even just sit properly, and communicate.

He has, among other things, a sleep disorder (imagine the newborn stage... FOR LIFE), ataxia (movement disorder), apraxia (coordination and motor issues), dysphasia (communication impairment in the brain—he is non-verbal), dysphagia (difficulty coordinating swallowing), a slow brain wave pattern (encephalopathy), a small head (microcephaly), a flat back head (brachycephaly), albinism, strabismus (a bilateral squint causing vision and depth issues), and epilepsy— all attributed to Angelman syndrome.

William has severe, complex, life-threatening epilepsy (7 known seizure types) that has put him in hospital every couple of weeks and even intensive care on life support. As a result, he has brain damage due to the seizures.

He also has laryngomalacia, bronchiomalacia, tracheomalacia, sleep apnea, severe reflux disease, Pseudomonas aeruginosa (a superbug in his lungs), and low muscle tone everywhere, leaving him with breathing and oxygen issues and general issues doing things we take for granted.

He is a brave boy with everything he’s been through and always bounces back with a giggle and a smile—even after a seizure, if he can!

He will never lead an independent life, move out, or have his own family.

We may never hear him say “Mummy” and “Daddy” or “I love you.”

William did the ketogenic diet for 2.5 years to try to control his seizures. Without a doubt, this saved his life.

He has, alongside NHS therapies, numerous private therapies that just don’t exist or aren’t accessible on the NHS.

He goes to/has been to:

Reach for Hippotherapy (physio on a horse, not just horse riding)

Jumpstart Centre for occupational sensory integration therapy

Kids Therapy Works for private physio

All the above cost around £80-100 per hour.

Please help us!

You have no idea how hard it is for us to ask.

Every penny counts!

The legal bit:

As I said above, this JustGiving page allows us, through the charity Tree of Hope, to raise vital funds for William’s needs and improve his motor function, give him the ability to use his digital voice, and improve his quality of life.

Why through a charity?

Well, it allows us to approach companies that can only donate to registered charities and ask for donations for William's cause. We can apply for Gift Aid, and even with the small fee the charity takes (which is less than direct JustGiving fees), we get more money per pound than doing our own crowdfunding page, as we have in the past.

They can also set up payments on our behalf to the therapies, saving me vital time and hassle! They can also help negotiate VAT discounts from companies, something we will need when we do the house modifications.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover core operating costs. If we raise insufficient funds or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

If you have any questions at all, please do not hesitate to call the family support team at 01892 535525.