Chris Straw, aged 17, lives with his Mum, Jenny, Dad, Ian, and brother, Andy, in Sway Hampshire. His little sister Amy was born with PH in September 2004 and passed away in June 2006. Here Chris talks about growing up with Amy and his recent fundraising efforts in her memory.

“As an older brother of a sibling who suffered from PH obviously life was very different for me and my family during the period that Amy was alive. Though it was a slight struggle we all had our routines and we all managed to make it work.

The standard day would involve going to school in the morning with my brother, who was three years older than me, whilst mum stayed at home and looked after Amy, as after all she was only a baby, and Dad went off to work. We would all be home by around 4pm and would sit and lay with Amy in the living room whilst Mum prepared her medication and got her pump ready.

Amy was always very good and at least 95 per cent of the time would stay perfectly still whilst Mum made sure everything about her pump was okay. I can only think of a few occasions when she was disturbed during the process which thinking about it, considering she was a one-year-old girl, this did always fill me with pride. Amy was always such a brave girl and always seemed to have a smile on her face whatever the situation was.

Due to me only being aged seven or eight at the time of Amy being alive, although I understood the situation and the possible consequences that could occur as a result of her condition I never really had a true understanding of her condition until I started secondary school and decided to research the condition and look with more detail into other families who have, or have had, similar situations to us. It was at this point that I realised I owe my mother a lot more credit than she gets. This, I imagine, is a statement a lot of teenagers would agree with, but for me even more so because of the fact that she, day in day out, worked her socks off for Amy and even today is just as committed to the rest of us.

Chris Straw and family

One thing that I believe our whole family have taken from the situation is that it all happened for a reason. As a strong Christian family we’ve always felt that Amy was a gift to us as a family. Her constant happiness was not only contagious but also inspirational. It is impossible to imagine, especially towards the later stages of her being with us – with her being brought in and out of hospital at regular intervals – how much suffering she must have been going through, however, she always managed to smile and laugh and bring joy to our family and everyone else who happened to meet her. I remember whenever Mum came to pick us up from school she would bring Amy and she would always be surrounded by groups of children from the school who just loved her, and, even though you would imagine if a one-year-old was surrounded by loads of people bigger than her she would have been intimidated, she wasn’t at all. She loved the attention she was getting – thinking about it she was a little bit of a drama queen.

I am currently studying at Brockenhurst College doing maths, chemistry, history and psychology. Ever since Amy passed I’ve had the ambition to go into either pharmaceuticals or become a paramedic with the aim of helping people with diseases like PH in the same way that Amy received a lot of help from people like that.

The story behind my fundraising for PHA UK was a funny one. At my secondary school we had a charity week every year during which we would always raise money for a certain charity, however, due to us being in year 11 and about to sit our GCSEs our charity week got cancelled. This was to my thorough disappointment as PHA UK had been chosen as the charity for the week that year. So at first this wound me up a little bit. Then I was sitting having a conversation about it with one of my friends when he suggested why don’t we do something anyway, which was a very kind and supportive of him but he was probably assuming I would turn around and say “yeah good idea lets go run a marathon or something”. I will probably never forget the expression of shock on his face when I asked if he would like to do the honours of shaving all my hair off in front of our year group.

The support for my head shave was absolutely huge and enormously humbling. Within the first two days I had smashed my original target of £100 and by the end I had raised an astonishing amount of money – over £1,200 – which was remarkable considering at least 90 per cent of the donations were from ordinary students at a secondary school with me. It gave me a great feeling of happiness knowing that I had friends willing to give that much to a cause personal to me and my family and I will be forever thankful to them. I would genuinely recommend shaving your hair off to a friend as it makes washing, drying and generally styling hair a whole lot easier, however, if you aren’t keen on the Phil Mitchell look for a few months then I would not recommend it. Before I sign off I would like to thank the PHA office for sending me a very large amount of merchandise to sell at my school as that was where the main source of funds has come from. I would also like to thank Great Ormond Street Hospital for the great work they did in looking after Amy whenever she needed them, and lastly I hope that my story encourages other family members of PH sufferers to be able to speak out about their situation and maybe also help get involved with the PH fundraising appeal.”