Holly Galloway-Howes is crowdfunding
Weʼre raising £1,500 to help fund Reuben's hospital trips
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Story
On December 21st 2022, the day before Roo's first birthday, we took him to see our GP with concerns about some slight cloudiness of his eyes. We were immediately referred to a consultant in Newcastle, who suspected Roo may have a very rare condition called Congenital Hereditary Endothelial Dystrophy (CHED). CHED is so rare, there are only three specialists in the UK, with working knowledge of the condition. The specialist nearest to us, being based at the Royal Manchester Eye Hospital, some 170 miles away from us in Northumberland.
The only treatment for CHED is surgery, specifically a corneal transplant, in Reuben's case, two corneal transplants. Thankfully, we haven't had to sit on the waiting list for the surgery for long, Reuben will be getting his first corneal graft on Wednesday 29th March 2023.
Provided Reuben's transplants go well and there's no problems (infection and rejection are both considerable risks in babies), we will be looking at four surgeries in total, two grafts and two micro stitch removals.
This process is going to be a long and massive logistical undertaking, and Reuben will require follow-up care for the rest of his life. In the first month following the first op alone, we'll be needing to travel to Manchester at least once a week. Unfortunately, all care including post operative care, will need to happen in Manchester, which means we'll be needing to self fund a lot of travel and accommodation on top of time off work, to make this happen.
We've set a target but truly, we don't know exactly what to expect from each surgery, so we're very much guessing and hoping for the best. We've no idea how much this will all come to going forward, we're just grateful for anything (and for those of you who have read this far!)
Thank you, from Holly, Richard, Toby & Reuben xxxx
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Updates
45
- 17 days ago
Holly Galloway-Howes
17 days agoFor now, poor Roo is back on the horrible eye shields 24hrs a day and antibiotic eye drops and we don't know whether we're coming or going. Nothings straight forward or done by halves in this family 🤦🏻♀️
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- 17 days ago
Holly Galloway-Howes
17 days agoThe Dash to A&E Cont. So at least they have opthalmic doctors and equipment to examine him. We *think* his host corneal tissue (his own tissue) has thinned out around where the drainage tube was inserted back in January. We're currently awaiting a phonecall from the eye hospital in Newcastle to let us know what time they want us back today for a more thorough examination with a more senior consultant. We're also now going to have to go to Manchester tomorrow for Roo's consultant to take a look and possibly do some surgical intervention 🤦🏻♀️
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- 17 days ago
Holly Galloway-Howes
17 days agoThe Dash to A&E - Roo's right eye gave us a scare last night. While getting him ready for bed I noticed the surface of his eye looked 'puckered' and not smooth. Definitely not how it looked earlier in the day. I fired off an urgent email to his consultant down in Manchester and attached a photo of his eye. Within minutes we had to ship Toby off to grandparents for the night, get a very sleepy Roo in the car and hot tail it to A&E in Newcastle. The RVI in Newcastle doesn't have any corneal transplant specialists, but does have an eye hospital...
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Holly Galloway-Howes started crowdfunding
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Supporters
262
Anonymous
Apr 26, 2024
£50.00
Old and Sassy
Apr 24, 2024
Go buy a f***ing takeaway and relax. Damn that car. xxx
£30.00
Caz McCazzy
Apr 23, 2024
£20.00
Xena twitter
Apr 23, 2024
From a mum to a mum, I think you're heroic. Sending positivity your way for little CG 2.0
£10.00
Zoeie Keogh-Bennett
Apr 23, 2024
Oh Roo! Hope he's back home soon x
£10.00
Daftbat
Apr 23, 2024
Just a little something to help.
£20.00
Anonymous
Apr 23, 2024
Hope the little fella’s doing ok
£10.00
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