Fulfilling Orlaith's potential

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Orlaith is our beautiful 1 year old, soon to be 2 in March 2024. At just 4 months old I began to worry that something wasn't right. She was difficult to hold, had feeding difficulties and wasn't reaching out or holding toys. At 18 months old we were given a diagnosis having gone through whole genome sequencing. What we were told that day turned our world upside down. 

She suffers with a genetic disorder caused by a rare spelling mistake in a gene called PPP3CA which controls the junctions between nerves. This means that her difficulties are likely to be widespread affecting her movements, speech and cognitive functions. Her doctors aren't able to tell us much about her prognosis because the largest study includes only 6 children. The gene defect has been associated with severe epilepsy and all of the children in the study experienced significant neurodevelopmental problems. 

Orlaith is a strong willed, determined and happy child. She is funny, sociable and beautiful. She has taught us so much including how to be truly grateful for what we have. We are learning to embrace the wonderful moments of today and hold them tight. We don't know what tomorrow will bring. 

Orlaith has been attending private physiotherapy for a year now. We aim to give her 1 intensive week per month between her NHS sessions. After each of these weeks we have seen her make tangible progress. From learning to pivot on her tummy at 12 months, sitting up off the floor at 14 months, crawling at 16 months, pulling to stand at 17 months, cruising at 19 months and taking her first independent steps at 21 months we know that therapy is magic. We also know that she is likely to need it for the foreseeable future. We have been self funding up to this point, but the cost is beginning to become difficult to manage. The cost of a week's session is around £400 so over the next 5 years this would add up to around £25,000. 

From the progress Orlaith has made so far we firmly believe (and doctors agree) that the more therapy we can offer her whilst she is still young, the better. Her brain is amazing and its plasticity at this age means that with lots of support she can make huge gains. We are keen to build as many neural connections before any seizures may begin.

Your donation will give Orlaith the gift of fulfilling her potential. We believe she could learn to walk, talk and gain independence - those gifts are life changing, but she needs a lot of help to get there.  We are fundraising to pay for therapies that will change her life. Physiotherapy, hydrotherapy, speech and language therapy and other specialist therapies are all imperative to her development. 

We have chosen to fundraise through the Tree of Hope Charity to offer donor reassurance - money is only released to cover approved costs associated with Orlaith's medical needs. Donations made via the Tree of Hope are also eligible for gift aid which boosts the value of your donation by 25%. 

We really appreciate you taking the time to read Orlaith's story and to try to understand what her condition in involves and how it affects us as a whole family. If you are not in a position to donate, please do share Orlaith's story with others as far and wide as you can.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

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