Our son, Takuma, was born on 14th May 2016. After spending 4 weeks in the neonatal unit after birth, due to his sleepiness and floppyness, he was diagnosed as Prader Willi Syndrome (PWS). We had never heard of this, so it was a big shock to learn about it... please read on to understand more about our son, and the challenge we all face going forward. 

You may not have heard of PWS, it is a rare genetic disorder that happens to 1 in 15,000 babies. It is totally random, and currently there is no cure.

It is a complex condition, and there are many symptoms differing in severity depending on each individual case.

During the infant stage, feeding is hard due to low muscle tone, and poor stamina. This often results in PWS babies having naso-gastric tube to ensure they can receive the correct amount of nutrition. Taku has one of these tubes - he spends a lot of his waking hours trying to remove it. Taking 3oz of milk is a challenge for him whereas other babies easily complete 5oz bottle. He gets tired easily, sleeps a lot and rarely cries, due to low muscle tone. Physical development such as holding neck, sitting, walking will be delayed as well as speech development.

Later in childhood around 2-3 years old the most notable characteristic symptom is insatiable hunger. He will never feel full, and always feel hungry. This often leads to obesity in children and adults, and can result in life-threatening conditions due to their low muscle tone. There is no treatment for the hunger, and no medication to relieve the hunger artificially. This is made worse as People witn PWS have decreased calorific requirement due to low energy expenditure levels - the perfect storm of being predisposed to put on weight, and not being able to burn it off, and feeling starving hungry the whole time. So, very strict diet and calory control are required since early toddler age.

Other than this massive challenge, there are many possible symptoms such as being shorter than other kids, usually some degree of learning disability, behavioural problems etc.

We don't think it is difficult for you to imagine how hard it was for us to take all these things in. The hurdle our tiny baby will have to overcome through his life is probably more significant than what we can imagine at this present moment. It's hard to cope with this thought as parents. 

Our Takuma is so lovely, and we are so proud of him. He makes us so happy everyday. His birth certainly did change our lives, and our journey just started.

We would like to spread the awareness of PWS. We believe it is very important for our son that people around him are aware of and understand his condition. We will need your support and understanding as the days, months, and years pass.

This fundraising website is to support research into finding treatments and cures for PWS. All money collected here will be donated to FPWR - Foundation for Prader Willi Research. Although there is no cure at the moment, there is a lot of research going on. Research is the hope for us. We appreciate your support. 

We hope that our son and all other PWS patients will have a bright future. We hope that the research will be progressed and a great cure will be introduced. We hope that doctors will say to the parents - "your baby has PWS but don't worry, we have a good cure for this...", so that parents will have a bright start- not having a deep sadness or despair like we felt at that time.

Thank you.

Eriko and William Brown-Bolton

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