Three weeks after Noah was diagnosed with hydranencephaly at 9 weeks old, I started to search the net for information. The first site I found was the Rays of Sunshine website, which had heaps of info about hydran and also a link to join a yahoogroup.
I joined the yahoogroup straight away and found over 150 other families on the group, from all around the world who all had kids just like Noah. Some had passed away (and were referred to as 'Angels') and others were still living. I was so happy to find other families to talk to and ask questions about Noah.
Over the past 7 years I have made lots of friends on the group. I am amazed by all of the families on the group. Many of them have adopted their kids with hydran, and many of them have adopted or foster many kids with hydran or with other disabilities. Many of them are members of the church (there are probably about 8 of us on the group) and it's great to be able to talk to them about things and know that they believe the same things that we do.
One person that I have kept in contact with over the years from the group is Kari. Kari is from New York and was a single Mum to Preston who had hydran.
I often followed Preston's life along closely because he was a similar age as Noah. Often Kari's Dad, Mike and Kari would email me about Noah and would say how Preston and Noah seemed very similar. I can see Noah's mouth and nose looks so similar to Preston in this photo.
Almost two years ago Preston passed away from pneumonia. He had struggled a lot in the last year of his life, and even though he had been sick on and off it was still a shock that he passed away.
Kari and I still keep in touch through emails and I have felt so sad as she has talked about how she feels since Preston has passed away. She is now living and teaching in England for a little while. After Preston passed away Kari set up a fund in his name. She had donated some of the money to get some rocking chairs made to be in the Drs surgery that Preston used to attend. These were for babies who liked to be rocked like Preston did.
A month or so ago Kari emailed me and said she had been reading my blog and saw how Noah needed funding for is new wheelchair. She asked me if we would like some money to go towards it as the fund still had a lot of money in it. I told her that we were okay and would eventually get the funding from an organisation such as Variety Club, and she then emailed me back and said she was going to send some money anyway and to do with it what we wanted for Noah.
I emailed her back and said how grateful we were, but we really didn't think we should accept the money. Her Dad, Mike then emailed me and was so lovely. He said he and Kari really wanted us to accept the money for Noah as it would mean a lot to them, and they know how hard having a child with a disability is and no one deserved it as much as Noah or we did (I felt differently!).
Today the money was transferred into our bank account. It is the only time I have ever been glad that the Aussie dollar is low! :) We feel so overwhelmed with how lucky and blessed we are. It is a lot of money - enough to cover the cost of a new seat on his wheelchair. We still aren't sure how it will be used, but know it will make things so much easier - even with the everyday expenses on things such as nappies, meds, feeds, and other supplies we use regularly.
Thank you so much Kari! We are so grateful and really wish that you got to use the money while Preston was alive, as we know how much easier it would've made things especially as a single Mum. Noah is a very lucky little boy.