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The Kiddie Pool... Help Change Elijah's Life!

Item# elijahl
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About Me

Hi my name is Elijah and I was born with Prune Belly Syndrome.



Also known as Eagle-Barrett syndrome, prune belly syndrome is characterized by three main features:

1. Lack of abdominal muscles
2. Urinary tract anomalies (such as a very large bladder)
3. Bilateral cryptorchidism (two undescended testicles)

The incidence of prune belly syndrome is about 1 in 40,000 births although I am only the 5th documented case in New Zealand; 95% of cases occur in males.

In the past, it was suggested that the abdominal wall was deformed by pressure from a distended bladder due to bladder outlet obstruction in utero. Currently, it is thought that prune belly syndrome is a multisystem disease complex which derives from a primary defect in development at about 8 weeks gestation. The major prognostic factor is the degree of dilation of the urinary tract; 20% of patients are stillborn, 30% die of renal failure or urosepsis within the first two years of life, and the remaining 50% have varying degrees of urinary pathology.

I was born in renal failure with grade 5 bilateral reflux. I have a lower urinary tract obstruction which prevents me from passing a normal stream of urine and at 4 days old my bladder ruptured through my urachus (belly button), the urachus is normally obliterated during embryonic development, transforming into a solid cord. Mine did not and for 6 months this was my only method of emptying my bladder. Then one day it closed over. After that I have suffered periods of up to 5 days unable to pass urine and this strain has now meant one of my kidney\'s has completely failed.

I have been hospitalized dozens of times for pneumonia as my mega sized bladder crushed my lungs before birth and with no muscles a little cough or runny nose can quickly become life threatening. I constantly suffer UTI's (urinary tract infections) and probably as a result of some of the medicines I get to treat them have lost my hearing. I do not speak and because I can't walk due to my muscles I lack the time looking at people's faces to have learned to lip read properly yet.

In the city where I live we have no paediatric renal specialists and my hospital have no plans to send me to Auckland's Starship hospital to see their renal team until I am in end stage renal failure (requiring dialysis and transplant). To date I have not been offered any surgery to repair any of my urinary problems and now with the help of my Mum and the wonderful support networks I am hoping to beat the odds and not be one of the statistics! In less than 3 months I will be turning 2...something that only about half of kids born with Prune Belly Syndrome get to celebrate.

Aside from a birthday party mum has a few dreams for me:
1. to learn to walk eventually unaided but in the mean time with the help of a gait trainer/walking frame, this needs some added support as my main method of communication is still NZ sign language so I need my hands free.
2. to learn to talk, again we need speech and language therapy, a lot of time spent in an upright supported position so I can see people\'s faces when they are talking or signing to me.
3. to have surgery to down grade the kidney reflux in order to prevent further damage to my remaining kidney...while it still works it is already grossly enlarged due to doing the work of 2.
4. to get tummy muscles...this is a surgery that is only done by a couple of skilled plastic surgeons and while it's not new it has not yet been done in New Zealand.

For more information please see www.prunebelly.org and www.prunebellysyndrome.net


**Donation graphs will update within one business day of donation.

Fun Facts

Fun Facts about Elijah!

He is 22 months old!

He likes playing with his Thomas the Tank Engine!

Next year he will start Preschool!

His favorite color is Red!

My Need

The Optional Walker Sling Seat will help me so much!


Pool Rules

Here are the steps you need to take to become part of the Kiddie Pool program:
  1. Fill out the Kiddie Pool sign-up form below.
  2. Adaptivemall.com will create your child’s webpage using the photograph and information you've uploaded in the sign up form. This will take 2-5 business days.
  3. Adaptivemall.com will prepare an email and send it to you. You will forward it to your friends and family directly.
  4. The email will link your friends and family to your child’s Kiddie Pool Page where they can choose the amount of their donation.
  5. Your assigned Adaptivemall.com Kiddie Pool Account Manager will notify you when each donation has been made, who made the donation and when you reach your desired goal.
  6. Once your goal is reached, you can order your child’s equipment.


*Adaptivemall.com requires your permission to use your child’s first name & last initial and age on our website. No geographical or address information will be used.

*An excess of funds might be in your child’s Kiddie Pool when the goal is reached. If this occurs, no refunds will be given. You may use this excess of funds towards additional merchandise.

*Your dollar amount goal is based on the product and accessories current price. Actual order total is subject to change based on price changes set by each manufacturer. If a price increase has occurred, you have two options:

1. Increase your goal amount
2. Put acquired funds on credit with Adaptivemall.com for later use

*Donations are like gift certificates. They can only be redeemed for product or credit on account with Adaptivemall.com. They cannot be refunded. Certain items cannot be shipped outside of the contiguous 48 states. We will notify you if this is the case with any item choosen. If the item can be shipped outside of the contiguous 48 states, shipping charges will apply. If extra shipping expenses are incurred, you will be responsible for the amount.

*After your goal is met and before your order is placed, Adaptivemall.com will verify sizing with our staff therapists.
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