When it rains, it pours ..

basil

Distinguished Member
Hi all.
I haven't been active on here for a long while.
Family issues took over and it seemed like it would never end. Well, move forward to the beginning of this year and it looked like we were coming out the other side.
Until .. Two weeks ago my five year old Grandson Isaac was diagnosed with the very rare Battens Disease. How rare? Well at present approximately only fifty children in the UK suffer from Battens Disease. Isaacs life span is expected to be late teens to early twenties.
He has just started a course of treatment at Great Ormond Street Hospital which if successful may give him a bit more time but it isn't a cure. The treatment is so new that there aren't any success / failure statistics.
My daughter Aimee and her husband Ade are totally heart broken as we all are.
One day we'll get a break .....
 

Uncle f

Well-Known Member
I’m sincerely sorry to hear this news. I’m sending you all my thoughts and prayers.
Life can really be a a right ****er mate

I’m thinking of you all
Regards Steve
 

FrenchieBoy

Well-Known Member
Basil, words can not explain how I feel for you and your family, reading your original post has brought a lump to my throat, no-one deserves that sort of thing in their lives especially with one so young! I wish you and all of your family well, especially Isaac, please let him know that we are all thinking of him.
Take care my friend and even though it is no doubt very hard to do try to keep well and happy. :tiphat:
 

bogtrotter

Well-Known Member
Hi all.
I haven't been active on here for a long while.
Family issues took over and it seemed like it would never end. Well, move forward to the beginning of this year and it looked like we were coming out the other side.
Until .. Two weeks ago my five year old Grandson Isaac was diagnosed with the very rare Battens Disease. How rare? Well at present approximately only fifty children in the UK suffer from Battens Disease. Isaacs life span is expected to be late teens to early twenties.
He has just started a course of treatment at Great Ormond Street Hospital which if successful may give him a bit more time but it isn't a cure. The treatment is so new that there aren't any success / failure statistics.
My daughter Aimee and her husband Ade are totally heart broken as we all are.
One day we'll get a break .....

Sorry to here this , life can be really cruel .
 

Franchi Matt

Well-Known Member
Ahhh sad news for sure 😪 but if hes under GOSH hes getting the best care in the country, my lad was looked after by them - and still attends yearly check ups.
 

sikamalc

Administrator
Site Staff
Hi Basil,
Life can certainly come along now and again and kick you right where it hurts the most. I and my other colleagues of the site wish the young lad every success with his treatment, its amazing sometimes how resilient children can be.
My personal best wishes to you and all your family.
 

tozzybum

Well-Known Member
So sorry to hear this Basil thoughts and best wishes to you all.
Our friends daughter has Rhetts syndrome and against all the doctors doom and gloom she recently had her 16th birthday party.
Stay strong kids are far tougher than we think.
 

kes

Well-Known Member
It must be heartbreaking for you. As with all the above, if thoughts and prayers were a cure your young man would be well again in no time. For what it is worth, my thoughts are with you and your daughter and her other family. There is no justice in this world since children should always be able to lead a full life and no parent should lose a child.
All the very best for the immediate future. There will be hope and you all deserve a miracle.
 

JTO

Well-Known Member
Nothing more to say that hasn't already been said.
Rather confirms my post on the Bucket List thread.
 

bfltd0

Well-Known Member
I can fully empathise with your feelings.

My nephew was diagnosed at the age of 9 with Primary Pulmonary Hypertension. Back then, the average time from diagnosis of this condition to death was 5 years. However, medical research and medicines are getting better all the time. He ultimately passed away when he was 22 and while his quality of life wasn't always the best, he and the rest of his family and friends were glad we had so much time with him in our lives.

It will be and always is hard when they leave, but you just have to remember to treasure the time you have available with them. And celebrate their memory once they're gone.
 

TomT3

Well-Known Member
Hi Basil, as already stated not a lot more to say than what has already been said -like most I have three young children my self and can only imagine the pain. Best wishes to the young lad, your daughter and yourselves. All the best.
 
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