Courtney & Jess charity skydive

Me and my sister will be doing a 15,000ft sky dive that will take place on Saturday 31st May 2025 to raise money for Metabolic Support UK. If you can spare a donation please do to help charities like Metabolic Support UK carry out the work that they do, research is vital in these illnesses and allow us to hopefully find cures or treatments to better the life’s of those living with metabolic diseases like our nephew Reagan . As some of you may already know Reagan has a metabolic condition and here is a little bit of his story ..

Reagan is 11 years old and suffers from a rare urea cycle disorder called argininosuccinic aciduria ( ASA ) which effects 1 in 70,000. His body does not produce arginine therefore is unable to break down proteins which can cause a build up of ammonia in his body.

He was born starved of oxygen therefore he was put on a ventilator and had a feeding tube, the protein in the milk made his ammonia levels rise to 1800, supposed to 50 which shows how severe this was. Due to this he began to have seizures and fell into a coma. This is when Reagan was diagnosed. After a few days he did what the doctors said was unlikely and woke up but his brain has suffered and is partly damaged. He was in intensive care and was connected to so many tubes and needed so many tests that we were unable to hold him. After 2 weeks we finally got to hold him and give him his first cuddle and 2 weeks after that we got to take him home where he belongs, where he fights so hard to be.

Today Reagan has to take several types of medicine, several times a day and missing a dose could be life-threatening. He follows a strict diet where his protein is monitored Due to having a low protein diet his muscle tone is low . He has regular meetings with A Metabolic Team and has to have regular blood tests to check his ammonia levels . He also has a stomach peg fitted and have done for several years now . In the last year he has had open heart surgery to fix a valve in his heart which was not related to his condition just down to bad luck but as always he absolutely smashed it and made it look a breeze .

Despite everything he has been through and still has to overcome he is the happiest little boy who takes a smile with him where ever he goes. He is determined to live beyond the barriers of his condition by fighting every obstacle that comes his way. He refuses to let it bring him down. It can not be put into words how incredibly proud of him we are .

It is now our turn to channel our inner bravery and make him proud of us that’s why we have chosen to raise money for this charity close to our hearts.