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louise's egid awareness

Fundraising for FABED

5 %
£20.00
raised of £400 target
by 1 supporters
Donate
  • Event: egid awareness

FABED

Families Affected By Eosiniphilic disorders (FABED) is raising the awareness of Eosinophilic disorders in the UK and helping sufferers and their families improve their quality of life. Little is known and awareness is poor, please help us to help them by donating on just giving.

Charity Registration No. 1143267

Story

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Id like to introduce my 4yr old son, D, who has eosinopheilic colitis.

from infancy D had struggled to feed as well as taking solids, this resulted in poor growth and weight issues,

by D's first birthday he weighed 8kg and fitted in 3-6 month clothes. After raising my concerns with the health visiting team I took him to see, our GP who immediately saw something wasn't right. He was refered to our local hospital to see a paediatrician gastroenterologist, whom ran blood test , stool test, these test showed inflammation markers, high calprotecin levels  . Initially D got put on a strict milk and soya free diet, and his formula milk was replaced by a amino acid based formula. Having monthly stool test his calprotecin levels continued to increase, and was refered to a specialist gastroenterology unit. The gastroenterology team admitted D for Ng feeding, this is when a nasal gastro tube is placed into the nostril and pushed down into his stomach, he had upper endoscopy and sigmoidscopy that showed eosinophelic cells, he also had a impendence study, done which showed silent reflux, over 6 months D was fed via the Ng and had intense, food play therapy to encourage eating. His calprotecin levels continued to raise and was put on a strict gluten and wheat free diet, D still struggled to grow and gain weight, he was tried on calorie supplements which didn't help and he reacted to, he was taking alot of medication and had rectal bleeding severe abdominal pain. local gastro consultant grew increasing concerned, he liaison with the specialist unit and was admitted for a endoscopy, and colonoscopy, I agreed to allow the team to take a extra few biopsies and blood for research purposes.

 At this point D was on a milk, soya, gluten ,wheat, egg, chicken free diet, with no improvements his biopsies showed a condition called EGID, and was commenced on a strong drug sulfasalazine,for 4 months and still no improvement, he the was put on a high steroid treatment prednisone for 10weeks, still no improvement which left just one option a elemental diet, due to daily volume and awful taste, he was referred for a gastrostomy which is a surgical procedure where a feeding tube is placed into the tummy, so D would be fed 12hours continually over night , D is currently awaiting date for the gastrostomy and will be temporarily fed via the Ng tube through intervals throughout Te day time,

D is 4yrs old weights just 11kg and still struggles to gain weight maintains his weight and grow .

I am raising awareness for this condition as it isn't common and diagnoses is done via biopsies , many doctors and nurses are not egid aware as its not a everyday thing they see in clinic on a daily basis. The children generally look well as its a invisible condition that effects there insides, people ask my why his so tiny and underweight I simply reply multiple food allergies,

we need to educate society about this condition, and most of all support the families  this is a condition that varies day to day, hospilized several times each year affecting mums, dads and siblings and most of all children like D.

I'm fundraising in many different ways and would appreciate donations. Which goes directly to the charity FABED


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