Godfrey Haire writes:
“This year, to show my support and thanks to Rainbow Trust Children’s Charity, I thought I would do a little more. So I will be doing the brutal Ride 100 which is a timed 100-mile race around London and Surrey on 4th August. However, as this is my fifth time taking part in this event, I thought that I would raise the bar and do the 7 Colours of the Rainbow Challenge which will involve:
🚴🏿♂️Group 500km static bike ride
🚴🏿♂️Cycle the distance across America, only 4828 km
🚴🏿♂️Cycle up Everest 4 times, a cool 120,000 ft
🚴🏿♂️Cycle up Sa Calobra, Mallorca
🚴🏿♂️Cycle up Ventoux, French Alps
🚴🏿♂️Cycle Ride London Surrey 100 as part of Team Henry with the rest of the Rainbow Trust riders
🚴🏿♂️Hever triathlon, just to mix up the cycling!
I am fundraising for the Rainbow Trust Children’s Charity because they support my family.
My son Henry was born with a rare condition called posterior urethral valves. This has left him with severe kidney and bladder damage and he is entirely fed through a tube in his stomach. He has had his bladder reconstructed using a part of his bowel and a Mitrofanoff made so he is able to catheterise several times a day. Henry also has a Hickman Line connected directly to his heart which needs changing every week in London. In the future, he will need a kidney transplant but for now, thanks to the Evelina London Children’s Hospital and support that we get from our Rainbow Trust Family Support Worker Nicki, he is a very happy child.
On a daily basis, Henry has many syringes of medicines to keep his kidney function where it should be. He is also catheterized every 3 hours and is peg fed through a port on his stomach through the night. Also, every week he attends the Evelina Children’s Hospital where his Hickman line dressing is changed and bloods are taken. Even with all this he still smiles every day!
Nobody expects to be in our situation, including us and as amazing as our friends, family and colleagues have been and will continue to be, there are times as a family we just need that extra bit of support. This is where Rainbow Trust has stepped in. Nicki our Family Support Worker is there whenever we need her, to help with the practical things like driving Beccy and the kids to the hospital for Henry’s check-ups and treatments and entertaining Thomas during the long waits for consultants and tests.
She is also brilliant emotional support when the stresses and strains of our situation get too much. Nicki has been on this journey with families 100’s of times and because of that she understands the doctor’s jargon, she knows her way around the hospital and she is a dab hand with Nerf gun! It’s all these things and more that Nicki does that makes things just a little bit easier for us. She can’t cure Henry’s condition, but she can and she does help us and other families in similar situations cope day to day.