The loss of our little man.

Thanks for taking the time to read about Lewis's condition and supporting me and Emma.

On Weds 15th March 2023 at 19.07 we lost our Ray of sunshine, Lewis to Mitochondrial degenerative disease.

Since Feb 13th 2023 Lewis fell ill with difficulty breathing and other symptoms. We rushed Lewis to Salisbury Hospital that evening where he was suffering from a Sepsis attack. When they were trying to put an oxygen line in he went into cardiac arrest and had to be defibrillated and have 8 minutes of chest compressions. Luckily he came back and was then transferred to Southampton Hospital into the PICU unit. He was then treated for an infection of the heart valve, which he appeared to have made a good recovery and we were discharged Feb 21st 2023.

We had another visit to Southampton on 25th Feb where his sats were monitored but at that time no real issues showed. Then on Thursday 2nd March on returning from work he was struggling to breathe during dinner and he wanted to go back to Hospital. We returned to Southampton hospital and his last couple of weeks were spent in the P.I.C.U. The staff had been fantastic but unfortunately, it was a terminal disease as the cells in his brain stem were degrading due to the Mitochondrial condition.

The mitochondria's main function is to produce energy in cells. More mitochondria are needed to make more energy, particularly in high-energy demand organs such as the heart, muscles, and brain. When the number or function of mitochondria in the cell are disrupted, less energy is produced and organ dysfunction results.

Lewis’s condition had affected the cells in his brain stem, which is the vital part of your brain which deals with your automatic functions like breathing, kidney function etc and is also your brain’s connection to the rest of the body.

An estimated 1 in 5,000 people have a genetic mitochondrial disease but there are only 20 reported cases globally of the type of condition which was specifically to do with a gene called TTC19.

We are so grateful for the support we have received from family, friends and work. This last year has been very difficult with many 1st’s without Lewis and stress of money as we both struggle to come to terms with this.

Our lives will never be the same.

Sleep tight little man.

Mummy and Daddy (Stuart and Emma)