Henry and lily Chronic Granulomous disease

by Ian Holmes in High Green, England, United Kingdom

Henry and lily Chronic Granulomous disease
We did it
On 9th March 2020 we successfully raised £200 with 5 supporters in 28 days

????Provisional dates????Henry will be having his central line fitted on the 10th, chemo to start on the 12th and transplant on the 20th Mar...

by Ian Holmes in High Green, England, United Kingdom

  • ????Provisional dates????

Henry will be having his central line fitted on the 10th, chemo to start on the 12th and transplant on the 20th March! ????

It also seems that Lily probably won't spend the entire time Henry is being transplanted in hospital too. 

Her transplant will start after Henry's discharge from hospital, but while we are living in the Newcastle community.

There is someone out there who will, by one act of kindness, save my son & daughter from a short life that would have been filled with illness and will give them a life of possibility. 

After much thought I have decided to make a crowd funding Page due to the financial constraints we are about to face over the coming 12 months.

Mainly because we’ve found that UK information is scarce because it's a very rare condition. That most of the information we have found has been scholarly articles. 

Facebook groups tend to focus on the other side of the pond where treatment is different and in all honestly because we’re super new to this, reading anything the scary side of CGD is prevalent and something that I we’re trying to avoid.

We know lots of you already know about Henry and Lily’s condition but again we are no experts, but with 2 children with a very serious genetic immune deficiency we will be learning as we go, as we all do when plunged into something we need to learn quickly. 

The future is a bone marrow transplant for Henry that will be done in Newcastle childrens hospital. Then Lily will follow accordingly.  The UK is lucky enough to have 2 hospitals that deal with children with compromised immune systems and specifically chronic granulomatous disease. 

It's a day by day process, we start March with a plan and it can change 3 times before a a final decision is made for transplant. 

This is the start of a very long journey.

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