However, what was to follow would change our perception of our future and our 'expected' family life. Both Ellis and Jesse were floppy, hardly moved (Hypotonia) and were silent. To me, my babies were 'just tired', however, at 4 weeks old Ellis was diagnosed with Prader-Willi Syndrome, and then at 6 weeks old, Jesse also. At that time, I felt like our world was collapsing as the unknown was frightening.
Prader-Willi Syndrome is a lifelong condition and is caused by a rare (1 in 15,000 births) random genetic mutation. It is nothing that we did or didn't do and both my boys have the condition due to being identical twins. Some of the symptoms of the condition include feeding difficulties in infancy, low muscle tone, mild to moderate learning difficulties, challenging behaviour and a dysfunctional Hypothalamus (area of the brain which controls hunger, hormone production and temperature control).
Due to the boys low muscle tone this has caused a number of issues. It has meant that they are delayed in their motor milestones such as sitting, crawling, standing, walking. Also, your muscle tone helps to keep your spine at the correct position, but due to the low muscle tone, Ellis has recently developed scoliosis of the spine (curvature) and Jesse is at high risk. Building their muscle tone may help, although not correct. The lack of tone (plus prematurity) has also meant that the boys have Plagiocephaly and Brachycephaly (flat head syndrome) requiring helmets for several months.
The NHS does not offer support for the boys heads as it is classed as 'cosmetic', however both boys are in the severe category (their beautiful hair disguises this currently). If this was not addressed now, the boys skulls would fuse and remain in that shape and I was concerned about future bullying. We made the decision to go private, at the cost of £4,000.
The boys have not been physically seen by an NHS physiotherapists since December 2019, Covid 19 has meant only 2x video calls, so I feel we need to push for private physiotherapy in order to build the boys muscle tone to help their spines and support them reaching their milestones. (Private Physiotherapy is still practising).
For both of the boys to have 1 hour (per week) costs £180 (£90 each). That is £720 per month for them to have 4 hours therapy each.
Due to the boys helmet treatment, we have used all savings and had support off my fantastic parents. However, as a family we cannot afford ongoing sessions, so if we could raise money to book a block of physiotherapy sessions for the boys, I feel this would make a huge difference to their spines and achieve their milestones. We would be looking at starting therapy as soon as possible and will be doing ongoing fundraising with family and friends in order to help our boys. Such as the Welsh 3 peaks in 2021 and other local fundraising (covid 19 permitting).
Regardless of the above, Ellis and Jesse are well in themselves, happy and content little boys. They are our world, we are not only their parents, but their biggest supporters and advocates. If you could help us to help them reach their full potentials we would be forever grateful.
- Sheryl Jones
- Alison Jones
- Sharon Lawson/jones
- Jake Aldridge
Organiser and beneficiary
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