Weʼve raised £1,508 to allow Malachi a private genetic diagnosis and test to ascertain which type of gene is affecting his Mitochondrial disease.
- Poole, UK
- Funded on Saturday, 20th July 2019
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Malachi is a lovely boy. He has an older brother called Connor - who supports Liverpool Football Club and younger sister called Violet (a right wee cutie). Malachi’s passion is sharks. I mean teddy bears are cuddly, dogs are cute but our boy loves sharks so much!
He looks like a normal child but behind that smile there is a world of struggling. Some days, and recently more often, Malachi finds hard to show his smile and we, his family, have to deal with the screams of pain he has everyday.
Malachi was seen by several experts here in UK and they assessed he has a condition called Mitochondrial DNA Depletion (sound familiar? Well it is the same disease that sadly took away poor baby Charlie Gard). Although the numerous assessments he had, Malachi is still currently undiagnosed as the gene which causes his pathology is unknown. The NHS has put Malachi in the list for a test called 100.000 gene, but this test will take a long 2 years before getting any result back. This is fairly too long waiting considering his degenerative condition and considering that his general health and conditions are visually worsening day by day with a reduced quality of life. We had a private consultation already with an international team of experts which considered the 2 year waiting far too long and so agreed to move forward privately for his own benefit and to get more chance for viable treatments. They suggested us a centre of excellence in UK and other couple in Europe that will work for him in order to get his diagnosis sorted and move forward to the next stage. This is obviously expensive, so we need fundraise to support the cost of the test and any other related expenses.
Malachi also has other complex issues but as he is at the moment undiagnosed we cannot be sure if they are related to his Mitochondrial disease or not. So please he needs your help to get this diagnosis as soon as possible.
As his mum, I hate Mitochondrial disease. I hate what this is doing to my baby. I hate when he gets frustrated and when he can't get his words out, I hate when he says my legs are wobbly, meaning they are too tired to carry him, or when he falls when he's trying to catch up with his brother and sister. I hate it when he says he feels dizzy and looks pale due to lack of food intake as well as I hate it when he's sitting on the sofa crying due to leg pain again.
I hate it when he's in the 3rd, 4th, 5th meltdown because he doesn't understand something, or he's anxious.
I hate it when we have to take him to hospital for his regular blood test, heart checks, brain scans, kidney checks, eye checks, and we have to tell him we are not going to hospital just to get him in the car 😢
Most of all I hate not knowing what the future holds for him and knowing there is nothing I can do about it! ♥️💚♥️💚♥️💚♥️💚♥️💚
Please, to allow Malachi a better chance and a better quality of life, we urge your help! Even a very small donation will make a huge difference in the journey of this little warrior fighting everyday with his Mitochondrial disease!
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We have no words to express our thank you for your kind support
- 1 year ago
Holly Seymour1 year ago
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Jan 12, 2019
Oct 4, 2018
Sent wih love for malachi x
Sep 26, 2018
Sep 20, 2018
Love from Rebecca Zerfahs xx
Sep 20, 2018
Big hugs to Malachi 😍😍
Sep 20, 2018
Sep 14, 2018
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