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Raising funds to help Maxwell

We are looking to help Maxwell in three ways that can make a vital difference to his quality of life:

Medication

Maxwell has shown a promising initial response to an experimental drug that achieved amazing results for another little boy in America. A year’s supply of the drug will cost £30,000 but because there has been no formal clinical trial yet, the NHS does not cover the cost. Instead, Maxwell’s family must find the money to import the drug directly...

Hydrotherapy Bath

Maxwell loves the water! It is the one place where his body is neutrally buoyant, enabling him to slightly move his arms and legs. Maxwell’s family dream of him having his own accessible infection free hydrotherapy pool on their specially adapted patio looking out on the South Downs. The patio is ready and £35,000 for a specialist pool will make a dramatic difference to Maxwell’s life...

Physiotherapy & Wheelchair

Maxwell’s has an excellent NHS care team but their time is limited. £7,000 will fund specialist neurological physio sessions for a year. These will make a significant difference to Maxwell’s muscular weakness and core strength. A further £20,000 will buy Maxwell a specialist wheelchair that would enable him to sit upright move independently and let him lay completely flat for toileting and emergency treatment.

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Help Maxwell in 2019

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Maxwell’s illness

Maxwell has a rare medical condition called thymidine kinase 2 deficiency syndrome (or TK2d). It is a genetic disorder that causes progressive weakness of the body’s muscles (myopathy).

Maxwell became ill at nine months old, firstly with Tonsillitis, which he was treated for in hospital. While recovering, Maxwell had a nasal gastric tube inserted into his stomach for feeding. Unfortunately his last feed was rushed resulting in him choking and filling a lung with milk. The aspiration along with infection was the catalyst to activating his mitochondrial-disorder. The result switched off seventy per cent of his muscles instantly.

Maxwell’s TK2d has also weakened the muscles which control his eyes, causing droopy eyelids which severely affects his vision. His view of the world is strictly limited.

Maxwell is totally dependent on others in every aspect of daily life. He is supported by twenty-four-seven love and attention by family, friends and an amazing care team.

Totally dependent

  • He can't move his arms or legs
  • He can't chew or swallow
  • He can't move his eye in the sockets
  • He can't blink
  • He can't talk
  • He can't breathe without a ventilator
  • His condition is life limiting
  • There is no cure
As Maxwell's dad my job is to look after my son. He is the centre of our life and every day we get the biggest reward from the smallest of things.
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What is TK2d?

Thymidine kinase (TK for short) is a substance that helps vital biochemical reactions to happen within the cells of our body. TK is present in two forms in: TK1 and TK2.

TK2 enables ‘mitochondria’ (pronounced “my-toe-con-dree-ah”) to do their job.

Mitochondria is the “energy factory” of our body. There are several thousand mitochondria in nearly every one of our cells. Their job is to process oxygen and convert substances from the foods we eat into energy.

In fact, mitochondria produce ninety percent of the energy body needs to function. However, in TK2d, mutations (abnormalities) in the genetic code that produces TK2 leads to mitochondrial disease.

It is unclear why TK2 genetic mutations typically affect just muscle tissue, but the high energy demands of muscle cells may make them the most susceptible.

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Can TK2d be treated?

As yet, there are no NHS-approved medicines available to treat TK2d. However, there are some experimental drugs in the research pipeline in the USA and other countries. Hopefully in 2019 some encouraging treatment developments will be in process.

Today, Maxwell’s treatment focuses on managing his symptoms. Alongside constant care from Maxwell’s loving parents and family, Maxwell has a team of doctors and nursing staff from different specialties. A chest specialist helps manage Maxwell’s lung function and breathing. Physical therapy helps with his muscle function and movement and keeps what little function he does have in the best condition possible.

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Meeting Maxwell's Needs

Loving care around the clock

  • Daily Medication
  • Physiotherapy
  • Hydro Therapy
  • Out and About

Our 2019 fund raising needs your help

Medication

You can help us provide a year’s supply of Nucleoside. This will help Maxwell's muscle function and greatly improve his quality of life.

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Hydrotherapy

Maxwell’s family dream of him having his own accessible infection free hydrotherapy pool. It is the one place where his body is neutrally buoyant, enabling him to slightly move his arms and legs.

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Physiotherapy

Provide specialist neurological physio sessions for a year and a bespoke powered wheelchair with lay flat functionality.

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The Team

These vital areas of support could help Maxwell have a better quality of life.