Thanks for taking the time to visit my JustGiving page.

Kai has decided he wants to do a Skydive not only to tick something off that bucket list he holds but to raise money for the RMCH who take great care of his brother and many other children.💚

He will be climbing up to 11,000 feet to then be released with a 30 seconds free fall before parachuteing safely down to landing.🪂

We are incredibly Proud of him for doing this. If anyone would like to help him in supporting his fundraising it would be very much appreciated.🪂💪

Royal Manchester Children’s Hospital receives over 276,000 patient visits every year. For those children and their families it can be a very difficult time but with your help we can make it better for every child.

We are one of them families who receive the upmost best from this amazing hospital.

Our son Coby is under the care of the RMCH and has been since he was 3 weeks old.
Coby was born with a rare illness McCune Albright Syndrome with Neonatal Cushings.

Coby was admitted to hospital in a poorly state with thoughts that he had picked up a viral and was becoming dehydrated.
It soon became apparent this wasn’t his biggest issue.

At 3 months old whilst undergoing test after test now needing oxygen his battle seemed to be weakening, no answers, no outcome.
Then the day came a diagnosis, it wasn’t what we wanted to hear but we knew he had a chance, we wasn’t about to lose him.

McCune Albright Syndrome with Neonatal Cushings!

Fibrous Dysplacia
Polostotic throughout most bones, from a Skull to toes.
It destroys good bone and turns it in to scar tissue and fractures easily. Also causing pain, limping and uneven growth.

Cafe au lair skin pigmentation
Brown coffee like colour pigment on the skin.

Several Hormone producing tissues
Adrenal Glands
Thyroid gland

Neonatal Cushings

Coby suffered Neonatal Cushings produceing excess amounts of cortisol, the only way of him surviving was to have Adrenalectomy.
Coby is now reliant on oral medicine to keep him alive each day and night with an emergency injection of cortisol for when his body goes into shock.

When Coby breaks a bone his body goes into shut down straight away, his sugar level drops needing sugar gel, and an injection is required which we make up via a glass vial we smash, then use a filter needle to make sure there is no glass, then exchange with a needle we can safely inject into his body.

We have 30 mins to react, if Coby closes his eyes and loses consciousness we will lose him, his body won’t react to anything it will have slowed down to much to react to anything.

He will always need close supervision, because unfortunately he wouldn’t be able to do this himself.
He also does not recognise when his body is shutting down through viral illness and relies on others to recognise this for him.

Hyperthyroidism

Hyperthyroidism is a condition where the thyroid gland produces more thyroid hormones than are needed by the body. It is also known as an over-active thyroid or thyrotoxicosis. Hyper - means “over -“
Coby was bouncing not sleeping at night until medication was given.

Hypophosphatemia

Renal phosphate wasting an increased hormone FGF23.
Weakens the bones, muscles and the body’s energy.
Coby was very tired, weak, sore and then the phosphate kicked in, amazing how medicine can change the body.

Releases Salt

Coby has additional salt medicine, Sodium Chlorine throughout the day and night.
When Coby sweats through heat he releases salt and in warm weathers this can make him tired and weak and will quite readily grab the salt pot and just pour it into his hands.

Throughout all of this he is an amazing boy with so much character that lights up a room, he will say hi to anyone with some cheeky banter and appreciates life more than most, we couldn’t be anymore Prouder. X


Coby visits the RMCH on a regular basis and is under many specialists who always do their very best for him.
They are an amazing hospital and like a 2nd family to us.

Thank you for everyone Supporting Kai 💚it means so much to us all 💚🪂