Just Jude

*please ignore incorrect event dates above*
Our Son Jude was diagnosed pre-natally with Partial Trisomy 13, Cri du chat syndrome, and Pontocerebellar Hypoplasia (PCH). These rare genetic disorders come with lifelong disabilities, and life limiting conditions.
Myself (Heidi, mum) and Ryan (dad) have found that Jude is a very determined boy, and we want to give him the best opportunities so that his potential can be fulfilled. As he has grown, we have found that he is most affected developmentally and neurologically. Despite this, he is a very happy boy and to us, he is just Jude.
We are often asked by friends and family if Jude will be able to do certain things, but we have learnt that with the correct support in place and encouragement, Jude can achieve anything.

Why we are fundraising..

Jude has attended NHS physiotherapy sessions since he was only a few months old, but we have found that the sessions unfortunately are four week blocks every other 'school term', and are group sessions lasting just under 45 minutes. Because of this, we looked for a private physiotherapy clinic who would be able to help Jude work on his physical development.
We found Ability Therapies (Chelmsford, Essex), and they have increased Jude's physical abilities so much since we started sessions this summer (2024). In just a few sessions, we have seen a huge improvement in his stability (as he suffers from low muscle tone), and can see the benefit that this will bring to Jude's life. We believe that without these sessions, Jude's abilities would not be seen and he would not be reaching the goals that he is managing to reach. Currently, Jude is wanting to be on his feet, which with the support from Ability Therapies and supporting equipment, is a goal he may very well reach.
Private physiotherapy costs £85 per hour, and from next year we would love to increase Jude's physio to two sessions per month, totaling £340 per month.
The goal of £10,000 for Jude's therapies represents 2 years worth of physiotherapy sessions and includes an amount for additional therapies that he may need, such as feeding, speech and any equipment that would benefit Jude. We are hoping to raise this money over the next two years, through birthday/christmas gifting, and future fundraising. We will regularly update this page with how his funds are being spent, and how these funds have helped Jude at each stage.

Jude's Story..

During my pregnancy, we found out at my 22 week scan that our baby boy Jude presented with multiple abnormalities. Following an amniocentesis, in depth blood tests and further specialist scans, we found out that our little boy had two genetic syndromes - Partial Trisomy 13 (Patau's syndrome) and Cri du chat syndrome. He was also diagnosed with Pontocerebellar Hypoplasia (PCH). For us, the days and weeks that followed this news was scary. We didn't know the outcome, we didn't know what was going to happen, but we decided to give Jude a chance, and it is the best decision we ever made.
Before birth, we was referred to the Palliative care team at the Evelina Hospital in London to discuss comfort care, as Jude was expected to not survive birth, and if he did, it was expected that he would pass away within days if not hours. Once Jude was born, there was still a lot of unknowns, but after some support at birth, he began to breathe on his own with minimal support. It was in the days after this, whilst still an inpatient in the Oliver Fisher Intensive Care Unit, that Jude started to do much better than expected, and as parents we knew we had a determined little boy.
Fast forward 15 months, and Jude is thriving in comparison to those earlier expectations. It hasn't been without health challenges, as Jude developed breath holding December 2023, but incredibly luckily for us, this only lasted until the end of January 2024 and no seizure activity was found during tests.

Jude is under various NHS teams for his conditions - Neurology, Physiotherapy, Speech and Language, Specialist Paediatrician, COAST team, Palliative care, ENT, Dietician, Ponsetti Clinic - Orthopaedics, Audiology and Genetics. Jude is also supported by our local children’s hospice, Demelza.
By donating, you will help us to give Jude the best chance to live a fulfilling and happy life.

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 objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.