Mitochondrial Disorder - Mitochondrial Disease - Metabolic Disorders in Children

Tiana Honey Watson Fund for children with rare and metabolic disorders

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Kristen
Kristen Preston
Kieran
Kieran Preston
Stacey
Stacey Preston

The Preston Family: Kristen, Kieran and Stacey

The Preston Family Mitochondrial Story so Far

Paul and Rachel Preston say "We have lost Kristen to Mitochondrial Disease, in 1992 aged 3 months,
Complex I & IV of the Mitochondrial Respiratory Chain. We know we will lose Stacey and Kieran at some point"

STACEY:
Mitochondrial Cytopathy or her "secondary problems to her underlying mitochondrial disorder" as the medics, metabolic docs would like to describe, is causing her significant health, social and just every day hell and health problems now.

We know there is no cure, no treatment, no getting way from the fact this disease, is horrific with no mercy at all. But to see them both suffer daily, is hard and unforgiving.

Added to the already complications of epilepsy, gastrostomy feeds, double incontinence, unable to walk, complex medical needs, chronic learning difficulties, bowel and intestine problems, intermittent acidotic problems - now for the bonus - curvature of the spine (kyphosis) and scoliosis, osteopinia leading to osteoporosis, and spinal stenosis - yet she’s never walked and is barely 17yrs old. Its cruel. This has left her bed bound, in constant pain, muscle wasting, not living any life at all. Living on morphine every 2 hours, just so she can bath. Since January Stacey has been placed on Palliative care, to ease her pain more effectively, improve her short yet complicated quality of life. Hopefully, enabling us to be in a position as a family to go to Florida.

KIERAN:
13, has no language, is doubly incontinent, has bowel and intestine problems, muscle wasting, is autistic (which is particularly hard to deal with and manage) again secondary due to his underlying mitochondrial cytopathy, again gastrostomy tube-fed, and never walked. He started his new phase of problems, 12 months ago, with his urine, producing neat ammonia. (Imagine that for a moment, you’re peeing on your own skin, you have no idea why, you don't possibly understand, and it burns, it blisters, its painful and cruel).

His daily existence revolves around, vomiting, loose stools, raised lactate, pain, we are increasing both his liquid water and milk feeds to try and neutralize the ammonia, which to date has proved medically baffling. That's mitochondrial disease for you i.e. all bloods and urine have proved negative, for explanation.


Letter from Paul and Rachel Preston:
We as a family cannot thank the kindness, humanity and emotional support provided and given by Candice & Mel from TCharmed "Tiana Honey Watson Fund". Special people, special family, in so many ways similar to our own, having already lost such a special daughter, Tiana to Mitochondrial Disease, Complex I of the Mitochondrial Respiratory Chain. As we have lost Kristen to Mitochondrial Disease in 1992 aged 3 months, Complex I & IV of the Mitochondrial Respiratory Chain. We know we will lose Stacey and Kieran at some point, but the support being offered, by TCharmed, will enable a family trip we could only have dreamt about. Deams do come true, and we have TCharmed to thank.

Trip to Florida for Stacey
and Kieran Preston and
their parents.

Tcharmed is privileged to be able to help the Preston family give Stacey and Kieran a family holiday. Below is our letter of thanks from Paul and Rachel Preston.

Paul Preston runs the Childrens Mitochondrial Network: cmdn.org.uk

© 2017 T-Charmed
Registered Charity Number: 1116025