Tate was born on Monday 25th March 2024. Carla went in to hospital the day before to be induced, the waters broke but Tate wasn’t coping so it was decided he would be born by emergency c section. He was born 13 days overdue and weighed just 6 pounds 3. He was struggling to breathe so he was taken him to scbu, never did we think he would spend the first 6 weeks of his life there. They said Tate had talipes, undescended testes, the breathing difficulties and then feeding difficulties too. This was all a lot to deal with. Carla also haemorrhaged and had to go back to theatre, had a near miss with a hysterectomy and needed a blood transfusion. Tate was initially treated for sepsis but this wasn’t the case. There was lots of testing going on, Tate had a lumbar puncture, MRI, CT, EEG and ECG. He has been through more than most people do in a lifetime at his young age. Several conditions were mentioned to parents Carla and Carl, PWS and SMA to name a couple. Tate seemed to be improving a little each day and we all hoped all tests would come back clear but Friday 26th April mid doctors round the results had come back, Tate had Prader-Willi syndrome. We were all shocked, saddened and grieving the life we thought we were going to have. The family went straight on Google reading the worse possible outcomes. However there is a great Prader-Willi community though and we have been very lucky to meet other PWS families

Prader-Willi Syndrome(PWS) is a rare genetic disorder caused by missing genes on chromosome 15, typically resulting in hypothalamic dysfunction. Key symptoms include severe neonatal hypotonia (floppiness), cognitive disabilities, short stature, and an insatiable appetite (hyperphagia) that leads to extreme obesity if unmanaged. Behavioral issues, such as stubbornness and skin picking, are common. While it requires lifelong care, with strict dietary management and specialized support, individuals can lead healthier lives, with life expectancy extending into their sixties, though it is often reduced by obesity-related complications

The family also had the discharge meeting this day but the consultant decided now they had Tates diagnosis they would take Tate off oxygen. He was off oxygen all weekend. He was coming home Monday 29th April 5 weeks old, finally but on this day we had the dreaded call from no caller ID and it was one of the nurses in scbu telling us Tate had gone back on oxygen in the early hours so wouldn’t he coming home that day, another devastating blow. Oxygen and training had to be arranged that week. Carla and Carl had to stay in scbu the night before discharge to make sure they were comfortable with the oxygen, they were fine with the feeding tube and all went well and they finally got to come home Monday 6th May as a family.

Tate has done well by all accounts, he came off oxygen 2 days after discharge following a sleep study in Noah’s ark children’s hospital. Sleep studies are something Tate still has regular. He came off his feeding tube at 3 months old. Milestones are delayed and Tate and his family have to work very hard to achieve them. Tate is on his 4th physio in the NHS and appointments are sporadic. Tate has been on growth hormone since his 1st birthday and has to be injected every evening by his parents. There are lots of medical professionals involved, consultant, endocrinologist, orthopaedics, physiotherapist, occupational therapist, speech and language therapist, dietician and psychologist.

Tate recently was unwell and had a 3 week stay in children’s ward. He went in with difficulty breathing, there was no improvement with in 24 hours so he went on to IV fluids and antibiotics and high flow oxygen. First swab came back that he had HMPV a nasty virus. Whilst in hospital he picked up 2 more viruses. He had 3 courses of antibiotics and is still on long term antibiotics at the moment. He was also on steroids and a feeding tube. Oxygen and a feeding tube were very triggering after being on these from birth. Whilst in hospital Tate had an X-ray confirming the start of pneumonia but this also picked up he had scoliosis. The family were already dealing with so much and this was yet another blow. The nhs brace only prevents the scoliosis from getting worse, it doesn’t improve it so surgery may be inevitable. There are braces available privately which have a 70% success rate of improving.

Tate is due to have his 2nd operation. It is common to be born with undescended testes with Prader-Willi Syndrome and Tate had the 1st teste moved in June last year. Unfortunately his surgeon wouldn’t do both at the same time but his 2nd is being done 30th April.

As a family we would love to give Tate the chance of private physio and to go private for a brace but need some help doing so and have reluctantly set this up. Any donation will be appreciated and please share to raise as much awareness as possible.