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Emma Campbell raised £3,034 from 131 supporters
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Closed 03/08/2022
Weʼve raised £3,034 to Make precious memories and fund equipment.
- Funded on Wednesday, 3rd August 2022
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Story
Alfie is 8 years old, sonic the hedgehog mad and has recently been diagnosed with a disease called X linked Adrenoleukodystrophy, this disease affects 1 in 17,000 boys. Early signs of ALD are the same as adhd, Alfie had been suspected adhd since age 4. Unfortunately after regressing with his physical and mental skills in September 21 an MRI scan and genetic testing confirmed that Alfie had quite advanced ALD and would not be suitable for treatment. Within 3 months Alfie lost all his physical skills and is now totally dependant and relies on his wheelchair and family to get out and about. As this disease is genetic Alfies two brothers William (11) and Noah (4) have had to undergo genetic screening and brain MRI, Both boys have been found to have the same bio chemical markers as Alfie and will be scanned every 6 months to monitor changes in the brain. Noah already presents with adhd behaviour and is being monitored by consultants very closely! Bittersweet is that William and Noah will both be found bone marrow matches and will go straight for transplant if cerebral changes occur, this will not cure any existing damage but would stop future damage occurring. All 3 boys also suffer with addisons disease meaning they are steroid dependant for life, Addisons can go hand in hand with ALD. As it stands Alfies parents are trying to find a suitable home and disability car so that they can enjoy Alfies time as the loving family they are. Alfies condition is now life limiting with a prognosis of 2-4 years after the onset of physical deterioration. We are trying to raise money to help get Alfie any equipment not provided by local authorities and to make precious memories as a family while Alfie can still appreciate new experiences. Thank you all so much xx
Updates
10
- 2 years ago
Emma Campbell
2 years agoAlfie looked fab celebrating his uncle Chris and aunty Jodi's wedding day! He was the best ring barer around! He especially loved his suit, our Alfie loves nothing more than dressing up x Thank you all for your support xxx
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- 2 years ago
Emma Campbell
2 years agoWednesday Alfie came home from school early with a high temp and cold hands and feet, his skin was mottled and he was working very hard with his breathing. Mum and dad took Alfie to the children's ward to get checked out and drs were concerned Alfie was very poorly. He has been treated for adrenal crisis and sepsis since being taken in. Alfie has been amazing through all the testing, from chest x Ray, countless blood tests and 2 lumbar punctures, our little hero is still smiling! Hopefully home time soon now hes responding well to treatment!
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- 2 years ago
Emma Campbell
2 years agoSo this week we had a milestone moment! Alfie bear stood for the first time since Feb!! His amazing physio team have wanted to try this frame for so long but Alfie had a lot of pain in his legs and his muscles were so tight. Since having his feeding peg fitted Alfies meds have been changed and doses adjusted and he was ready! Look at that smile! Lots of tears from mum and dad and mum said getting to put her arms around Alfie for a cuddle was the best feeling in the world! Keep fighting Alfie Bear and keep smiling! Thank you everyone xx
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Emma Campbell started crowdfunding
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Supporters
131
Kerry Evans
Jul 27, 2022
It was lovely to meet you all. and its heart-breaking to read sending love xx
£30.00
James hornby
Jun 20, 2022
Love you Alfie 💙💙
£40.00
Mike L
Jun 19, 2022
It was wonderful to see Alfie at the wedding and it's wonderful that you are involving him in all the family gatherings. You are doing a great job!
£100.00
Anonymous
Jun 11, 2022
£10.00
Northwood Valiant
Jun 10, 2022
£20.00
Anonymous
Jun 9, 2022
£40.00
Vale fan
Jun 9, 2022
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