Young At Heart Charity SkyDive 2023

On December 28th 2019, we welcomed our beautiful baby boy Addison into the world.

Not even 24 hours after he was born we were taken to what would be the first of many heart scans, to try and get some knowledge on a heart condition we were told he'd be born with. Nothing could prepare us for what we were about to face.

Addison was misdiagnosed with foetal hydrops during our 12 week scan

which resulted in us being advised to consider termination options.

Further testing and advanced scans at Birmingham Childrens Hospital meant that Addison was

then correctly diagnosed with AVSD with a nearly absent ventricular

septum, bilateral superior vena cavas, pulmonary atresia and a faulty

pulmonary valve.

At 2 months old Addison was admitted to our local hospital with viral

meningitis which sent him into heart failure. At 4 months old Addison had

open heart surgery to correct the AVSD and pulmonary

valve only.

At this time we also found out that Addison has a microdeletion

on chromosome 8p23.1. This gene is responsible for correct heart formation

and it is missing in Addison. There are only 75 known cases of microdeletion 8p23.1 in the entire world.

The day after his surgery Addison suffered a myocardial infarction followed

by a cardiac arrest and went onto ECLS life support. He was monitored for

brain seizures, his right lung collapsed and he developed kidney failure. He

failed weaning off life support twice and we were told that the third attempt

would be the final attempt.

Addison managed to do it after 3 long weaning weeks. He then had to overcome his withdrawal to quadruple strength

morphine (which we later found out he was allergic to), and then began

treatment with the physiotherapy team and the speech

and language team.

Addison, now 3, is full of life. This has been massively helped by the physiotherapy team at BCH who

helped him to overcome the severe muscle wastage he developed during

his time on life support.

Through these darkest of times, we found ourselves joining the Young At Heart Charity family. Not only do they support our family but so many other families who have been on the most challenging and traumantic journies.

It is with the greatest pride I'll be taking part in this skydive and conquering my undescribable fear of free fall, in the name of Addison, our family, and all the other families we now call our friends.