AJ’s Dream
Fundraising campaign by
Natalie Palmer
-
£285.00raised of £250.00 goal goal
One year old Anthony Jack Rushe (AJ) sadly passed away on 31st Jan 2015 from a rare disorder called krabbes disease. AJ was a happy healthy baby but at 4 months his parents noticed he was not achieving his milestones. Following a 2 month mis-diagnosis of colic, AJ was eventually diagnosed with krabbes disease.
Krabbes is a disorder that causes the loss of hearing, eyesight, use of the nervous system, the ability to swallow and eventually breathe. Infants diagnosed with krabbes rarely live to their second birthday. If krabbes was screened for during the heel prick test, which is offered to all babies in the UK, AJ could have had a blood cord transfusion from a foreign umbilical cord. This operation would have given AJ the chance to delay the systems until adolescence, in the hope that research for a cure (currently going on the USA) would have been successful.
The UK currently screens for 9 diseases (this has just been increased from 5 in January) during the heel prick test, however this is well behind other countries; USA 31- 60 (depending on the state), Spain 29 and Australia & New Zealand 28.
It is too late to save baby AJ but not too late to save future babies from this terrible disease.
AJ's family have set up a petition to bring this in line with other countries; https://you.38degrees.org.uk/petitions/save-babies-through-screening
Please sign and share.
I will be running the Bristol 10k on Sunday 31st May 2015 in memory of AJ and raising funds for AJ's Dream. This will assist his parents, Jenna and Tony in setting AJ's Dream up as a registered charity and funding promotion of the petition in order to get it up to 100,000 signatures. Jenna and Tony, would also like to buy a memorial bench so all donations will be gratefully received and put to good use.
I followed Anthony's Journal on Facebook, set up by his mum, which was a day by day account of his life and loved hearing how AJ was doing and was heartbroken to hear of his passing. I have a son myself and would like to think others would do the same for me if ever needed.
Thank you
Organizer
- Natalie Palmer
- Bristol, UK
Donors
- Lisa Morgan
- Donated on Jun 01, 2015
- Virginia
- Donated on May 23, 2015
Have Fun- Run Hard!
- Becky smith
- Donated on Apr 25, 2015
Race Day - 31st May 2015
Update posted by Natalie Palmer at 07:32 amI managed to run the race yesterday in 1 hr 14 mins. I had a stich for the first 3k but after that it wasn't too bad but I'm in no hurry to do it again! Thanks to everyone who supported and sponsored me. I have also recently had �15.00. . . . .
Amazing news for Jenna and Tony!
Update posted by Natalie Palmer at 03:35 amI have some lovely news to share with you all. Jenna and Tony are expecting a baby girl! Two days after AJ's passed away Jenna had a terrible scare. Jenna had the CVS test to determine whether this baby would also have krabbes, with this test there is a 1% of miscarriage. The. . . . .
Campaign Update
Update posted by Natalie Palmer at 05:04 pmThanks to everyone who has donated so far. I've exceeded my target but welcoming further donations to raise as much money as I can for AJ's Dream. Lots of exciting things have been happening this month which I will share with you shortly. Re-tweets from Downtown Abbey actress Joanne Frogatt
30,000 signatures reached!
Update posted by Natalie Palmer at 01:13 pmGreat night on twitter with re-tweets from Emmerdale actors Liam Fox & Bhasker Patel, Linda Robson, Eva Pope, Daniel Portman (Podrick in Game of Thrones) & Call the midwife actor Sam Gittins. Only another 70,000 to go!
Cash Donation & Re-tweet!
Update posted by Natalie Palmer at 04:41 pm£10.00 cash donation from Karen Barnes this week, thanks Karen! Re-tweet from Beverley Callard aka Liz in Coronation Street.
Cash Donation
Update posted by Natalie Palmer at 01:55 pm£10 cash donation received from Heidi Curtis today. Thanks Heidi! x
Twitter Update
Update posted by Natalie Palmer at 05:21 pmRe-tweet from TV & Radio presenter Angelica Bell this evening. We are on 29,500 signatures, hoping to get this up to 30,000 this week. The ultimate goal is 100,000 signatures then the petition can be presented to Parliament.
Rare Disease Day
Update posted by Natalie Palmer at 05:27 pmToday is Rare Disease day which is aimed at bringing awareness to the general public of rare diseases and the impact they have on patients lives. A 7 mile walk took place in aid of this today for AJ from the Haslam duck pond to Avenham Park in Preston.
Colour Run -17th May 2015
Update posted by Natalie Palmer at 04:01 pmI've also just signed up to do the 5k Bristol Colour Run on 17th May 2015 so if you sponsor me you get two for the price of one!
Real Housewives of Cheshire
Update posted by Natalie Palmer at 05:45 amFinally got a re-tweet this weekend from Real Housewives of Cheshire's Magali Gorre. Lots of Fundraising ideas going on, a charity auction night is planned to raise money for AJ's Dream for Saturday 30th May at the Lea Club in Preston, also a sponsored walk is taking place and there is talk
Donors & Comments
- Lisa Morgan
- Donated on Jun 01, 2015
- Virginia
- Donated on May 23, 2015
Have Fun- Run Hard!
- Becky smith
- Donated on Apr 25, 2015
- Kelly Harris
- Donated on Apr 25, 2015
Good luck Nat
- Mum
- Donated on Mar 10, 2015
- Briley
- Donated on Mar 05, 2015
Go Nats and Tobias! Lots of love Briley x
- Jenna
- Donated on Mar 02, 2015
Good luck with all that running Nats! X
- Ant Palmer
- Donated on Mar 02, 2015
Well done babe. Very proud of you for doing this.
- Krina Cooksley
- Donated on Mar 02, 2015
Good Luck Nat x
- Sophie Ovens
- Donated on Feb 22, 2015