Help Deacon’s family be close during his treatment

Please help my good friends, the Hanson family of Castleford, to be near their 5 year old son, Deacon in hospital while he has his bone marrow transplant in Manchester this Christmas. 

Our friends, the Hanson Family:
Meet Deacon. Deacon is 5, he went to nursery with and is very close to my daughter (in fact they have said they’ll marry each other one day), and he loves superheroes and dinosaurs.

He lives with his Mum, Stacey, his Dad, Julian and his little sister Alanna.

Deacon also has a condition called adrenoleukodystrophy (ALD).

When his Mum, Stacey was 25 weeks pregnant she found out that she was a carrier of ALD, so when Deacon was born he was also tested and found to have inherited the ALD Gene. This has meant that Deacon has had to have regular MRI scans throughout his life, to check the progression of the disease. When Deacon was 13 months old he was also diagnosed with Addison’s disease, which is also a result of having the ALD gene.

The most common type of ALD is X-linked ALD, which is caused by a genetic defect on the X chromosome. X-linked ALD affects males more severely than females, who carry the disease.

The most common form of X-Linked ALD is Childhood-onset ALD. This form of X-linked ALD usually occurs between ages 4 and 10. The white matter of the brain is progressively damaged (leukodystrophy), and symptoms worsen over time. If not diagnosed early, childhood-onset ALD may lead to death within 5 to 10 years.

Deacon started to show signs of Childhood-onset ALD on his latest MRI scans, in May 2020 and more recently in Sept 2020.

All other scans before this were clear.

Due to Covid-19 there were delays between the scans this year, which hasn’t really helped, but a treatment plan is now in place for Deacon and he shall be recieving a bone marrow transplant in December 2020.

This means he will have to stay in hospital over Christmas and until the end of January at best.

Due to Covid-19 the hospital cannot offer the family any accommodation because they also have Alanna their 18 month old daughter who under current advice is not allowed to stay in the accommodation with them. They will have to find a place to stay themselves and pay a lot of money for it every week for a long time, plus all the other costs associated with doing that.

As if all this wasn’t enough to contend with, Alanna was born several weeks premature last year and spent the first few weeks of her life in hospital in Hull on a ventilator, with Stacey and Julian fearing they might lose her.

Then, just at the start of the Covid crisis, in Feb/March 2020 Stacey was diagnosed with cervical cancer, and had her treatment during lockdown and was just given confirmation of remission in Sept 2020.

The day after Stacey was given remission they got the phone call with Deacons MRI results saying the abnormality had grown and that he was going to be needing treatment.

Dad Julian has had so much to worry about for the last few years. Not to mention the extra financial strain that this year has put on the family, on top of several years of hospital stays for his beloved family.

To get through this next difficult time, they really need to be together, and not have to worry about how much it’s costing.

Let’s help them do that, let’s raise £5k for this 5 year old super hero and his super hero family.

The family really just want some help to cover the expensive accommodation and other related costs, and have also pledged to donate any money that is left in this fund (after fees) onto the ALD charity.