Adventures of Evelyn Skye
Donation protected
We have been so amazed with everyone's donations and reaching our initial target so quickly. Evelyn's condition is life-long and we know that we will continue to pay for equipment and therapies for her for as long as we can, so we have therefore increased our initial target amount.
Evelyn was born in Cairo, Egypt on 25th April 2020. At some point during labour, Evelyn suffered from HIE (Hypoxic-Ischaemic Encephalopathy). This is a lack of oxygen and/or blood flow to the brain.
This has resulted in a number of complex medical conditions for Evelyn; global developmental delay, cerebral palsy including hypertonia (high tone) and hypotonia (low tone), epilepsy including seizures and infantile spasms, as well as a lack of suck or swallow meaning Evelyn is fed through a PEG/J tube in her tummy. As time goes on and Evelyn gets older things may change as this is very much a 'wait and see' lifelong condition.
We are so so fortunate to have been able to return to the UK and register Evelyn with the NHS and she is now receiving support and care from a huge multi-disciplinary community team, as well as regular stays in hospital. The NHS are able to provide us with all the medications, syringes and lend us equipment, such as a suction machine and oxygen at home. However, there is some equipment where the waits are exceptionally long (up to 10 months for Tumbleform specialist seating!).
This obviously means that if we want supportive seating or developmental equipment for Evelyn, at times, we are going to have to fund this ourselves. Just like the Firefly Playpak that I managed to purchase second hand from the amazing online HIE community.
We are also looking into a variety of alternative therapies we can do with Evelyn. This is on top of her physiotherapy, occupational therapy and speech and language that is provided by the NHS. We know that the more work we put in now, the better the outcome will be for Evelyn. We are looking to do Snowdrop Therapy, Conductive Education, Hydrotherapy, as well as intensive therapy in the future.
We do currently have some private medical but unfortunately, this does not cover equipment at home or alternative therapies, so we have set up this page to help raise the money to cover these costs as specialist equipment and treatment is not cheap.
We want to thank you all for taking the time to read all about Evelyn's GoFundMe and for all the donations you are able to raise or give. If you would like to make a donation directly to us, just let us know and I can add this to the total as an offline donation.
Thank you,
Grace, Tom and Evelyn x
Follow Evelyn's journey on Instagram @adventures_of_evelynskye
Evelyn was born in Cairo, Egypt on 25th April 2020. At some point during labour, Evelyn suffered from HIE (Hypoxic-Ischaemic Encephalopathy). This is a lack of oxygen and/or blood flow to the brain.
This has resulted in a number of complex medical conditions for Evelyn; global developmental delay, cerebral palsy including hypertonia (high tone) and hypotonia (low tone), epilepsy including seizures and infantile spasms, as well as a lack of suck or swallow meaning Evelyn is fed through a PEG/J tube in her tummy. As time goes on and Evelyn gets older things may change as this is very much a 'wait and see' lifelong condition.
We are so so fortunate to have been able to return to the UK and register Evelyn with the NHS and she is now receiving support and care from a huge multi-disciplinary community team, as well as regular stays in hospital. The NHS are able to provide us with all the medications, syringes and lend us equipment, such as a suction machine and oxygen at home. However, there is some equipment where the waits are exceptionally long (up to 10 months for Tumbleform specialist seating!).
This obviously means that if we want supportive seating or developmental equipment for Evelyn, at times, we are going to have to fund this ourselves. Just like the Firefly Playpak that I managed to purchase second hand from the amazing online HIE community.
We are also looking into a variety of alternative therapies we can do with Evelyn. This is on top of her physiotherapy, occupational therapy and speech and language that is provided by the NHS. We know that the more work we put in now, the better the outcome will be for Evelyn. We are looking to do Snowdrop Therapy, Conductive Education, Hydrotherapy, as well as intensive therapy in the future.
We do currently have some private medical but unfortunately, this does not cover equipment at home or alternative therapies, so we have set up this page to help raise the money to cover these costs as specialist equipment and treatment is not cheap.
We want to thank you all for taking the time to read all about Evelyn's GoFundMe and for all the donations you are able to raise or give. If you would like to make a donation directly to us, just let us know and I can add this to the total as an offline donation.
Thank you,
Grace, Tom and Evelyn x
Follow Evelyn's journey on Instagram @adventures_of_evelynskye
Organizer
Grace Dennison White
Organizer