Blake's CCHS journey #BlakeIsHulk

$3,780 donated

Given by 60 generous donors in one year

Please Help us get baby Blake and his mumma Grace home from starship to the rest of the family. To start their new normal daily routine.

Northland

Baby Blake is just over 5 months old and has spent over 10 weeks in starship hospital. With a rare lifelong condition called CCHS. Congenital Central Hypoventilation Syndrome. (Stops breathing, holds his breath.)

Blake is Hooked up to breathing machines and needs monitoring 24/7. And now needs to have his 1st surgery, A tracheostomy where a full time breathing pipe will be placed in his throat for air machines to be hooked up.

We want to get Blake and his mumma home to the rest of the family instead of a life in starship hospital missing his siblings. Blake and his super mum Grace will have on going trips to starship every 3 months for regular check ups. Which is costly to say the least when your 4 hours away from home. So all funds raised go towards all the little things that add up to making the journey home and home life less stressful for Blake and his loved ones. Where he can listen to Stan Walker as loud as he wants without upsetting the rest of the Hospital because that's the magic music that helps Blake settle down fast. #blakeishulk #blakelovesstanwalker

Sam Naera's involvement (page creator)

I am just a good friend of the family who wants to help this little man come home and live his fullest life as comfortable as possible ❤

Use of funds

Funds go towards equipment and travel that Blake needs to assist making his life at home easier for him. And also to bring awareness of the rare condition that he has CCHS. Funds will be paid to Blake's Aunty, Rachel Waterman. Rachel is the designated bank holder for Blake while Blacke's Mum is in Starship with him.

Other page links

#BlakeIsHulk 9 July 2021

Hello to all Blake's followers.

So we haven't done an update in a while, so here goes. Today we are up to week 12 day 4 of this current stay that's 19 weeks in total so far in starship hospital in the middle of the RSV that is going on so little Blake is locked safely in his room away from all the current bugs. Mr Blake was ment to have been moved to whangarei hospital on the 28th of June. But scans showed 4 tumors which needed investigating. Turns out our little mate has 4 neuroblastoma tumors which is all part of his CCHS and will require surgery which is all booked in for the 19th of July and a biopsy will be done at that stage to see what needs to happen from then onwards.

So as per usual we are asking for more prayers, more shares , and any kind donations big or small. All is very much appreciated at this point in wee little Blake's life. Love , light and happiness to you all. From team Blake.

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