Henry’s daddy and I would like to ask for help to get our son the least damaging form of radiotherapy treatment currently available to him called Proton Beam Therapy.
Please watch the video attached to see Henry’s journey so far…
Henry is due to begin radiotherapy in September this year, however due to a lack of resources and other factors, Henry is unable to receive Proton Beam Therapy through the NHS and therefore we have no choice but to fundraise for him to have it privately at a place called the West German Proton Therapy Centre (WPE) in Essen, Germany.
Standard ‘photon’ radiotherapy has so many possible terrifying and life limiting side effects including:
- secondary malignancy in the heart, lungs and stomach due to the radiation seeping through the spine into those major organs.
-complete hearing loss due to damage to the inner ear.
-severe cognitive delay including processing, memory, decision-making, concentration and planning meaning Henry may be unable to live an independent life as an adult.
-Endocrine issues including stunted growth and the need for life-long growth hormones
- Emotional difficulties - difficulty controlling anger, impulsiveness, taking excessive risks and showing heightened emotions.
Proton Beam Therapy has the ability to greatly reduce the risk of these side effects because the radiation beam specifically targets the tumour areas without causing damage to the healthy tissue around it. Because Henry is so young, the negative effects on his body in the long term would be at the most severe end of the spectrum as his brain and all of his tissue is still developing.
Radiotherapy is what will cure our son but at what cost to his quality of life? Proton Beam will give him back that quality of life and that is why we need to find the funds to provide this chance for him.
The cost of treatment is just under £60,000 and so this is our goal. We are so lucky to have had the support of our community once already to raise funds to help us to cover our living costs during this nightmare when we are both unable to work. The money already raised is doing this and will also be used to cover our travel and accommodation and living costs whilst we spend at least 8 weeks in Germany getting Henry the treatment he needs. The rest of the money previously raised will also be kept as a ‘medical contingency’ as the £60,000 is purely for the Proton Beam Therapy as an outpatient so if there are any unforeseen medical issues whilst we are out there, we will have to pay for all of those separately.
It goes without saying that any money left over at the end of Henry’s treatment once he is in remission will be donated to Brain Tumour Research and The Brains Trust Charities.
We can’t thank you enough for any support you can offer our precious little boy.
- Alison Guest
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