For Our Mitochondrial Warrior Talis

We would like to share our story about our beautiful baby boy Talis.

During our pregnancy, our 13 week scan showed that there was increased fluid in the back of Talis neck. We was transferred to fetal medicine in Cardiff which showed that Talis had high chance of Down’s syndrome. All tests came back fine, all scans was fine but the doctors had said that there was chance there could be problems after birth. 7 weeks after birth Talis became unwell so after numerous trips to the doctors he was put out on milk to help with reflux. While there the doctor found a heart murmur. We was then referred back to Cardiff where Talis had a few heart scans which showed heart murmur and mild co-arctation of aorta. As time went on doctors had said that the issues with his heart was getting better. So we thought great, and headed home. As weeks went by Talis presented as a normal healthy 3.5- 4 month old doing everything he should have been and was thriving. Little did we know our lives was about to be change forever. Talis started to regress slowly! Overtime he stopped tracking objects, people and stopped focusing on things, he stopped smiling, babbling and laughing, stopped reaching out for toys, trying to roll over and completely lost all head control. He then started to have seizures. We haven’t really been home since. Talis has undergone numerous tests to the point where he now has no viable veins to use. He’s had continuous blood tests, genetic testing, metabolic testing, EEG’s, CT scans and MRI scans.

21st December it seemed like our whole world had stopped when we was told that Talis has been diagnosed with a rare mitochondrial disease called Leigh’s syndrome.

Leigh’s syndrome is a rare neurometabolic condition that affects the central nervous system. The disorder typically starts between 3 months of age and 2 years. The condition is characterized by progressive loss of mental and movement abilities. Symptoms that Talis has presented is no head control, poor & weak muscle tone, very floppy, development delays, seizures/infantile spasms, dystonia, unable to suck and swallow so he’s now NG fed & high lactic acid in each and every blood test. Talis has been given a maximum of 2 years to live which as a family has completely broken our hearts. He is 1 in 44,000 so as you can imagine this is a very rare disease. There is no cure. We was told to go home and make memories as a family. That day we got discharged and sent home to be together as a family my husband had to resuscitate his son. Unfortunately after a recent stay at prince charles, Talis has deteriorated more quickly than expected, so now we are spending quality time as a family of four at Ty Hafan to make all the memories possible before it’s too late. As you can imagine the specialized special needs equipment we are needing for Talis to be able to live a somewhat normal life and hopefully head home to be together is very expensive so we are hoping that by explaining his story to you and spreading awareness, we can hopefully raise enough funds to purchase this equipment quickly so we can spend whatever time we have left with him as normal as possible. However big or small your donation, we would be forever grateful to you all. We don’t need to be felt sorry for, we just want to be able to make our lasting time with our boy as special as can be. Your generosity will never go unnoticed.

Thank you for reading,

The Tomlinson family ❤️