Kilos for Aria

[Bekki]

Hi all,

Aria MacDonald is a little kiwi girl who turns two in June this year, and has a condition called Total Hirshchsprung’s Disease. With this condition she can’t eat food because her bowel doesn’t process it. Her best hope for continued survival is a bowel transplant operation which can be performed in America at a cost of $1-2 million dollars.

My brother’s fiancé Rebecca has recently left her job in order to focus fulltime on raising money for Aria’s operation.

Rebecca is involved in a weight loss programme and has created the website : www.kilosforaria.co.nz where you can pledge a certain amount of money towards every kilo that Rebecca loses in her efforts over the next 26 weeks.

Her goal is 30 kilos, so for example if you pledge 50c per kilo and Rebecca reaches her goal, then Aria will be $15 closer to her operation.

Rebecca wants to have her own children and needs to lose weight before that is possible, and this commitment to Aria is keeping her focused on her goal, so Rebecca is helping Aria and Aria is helping Rebecca.

Rebecca is hoping to spread the word through people she knows, and people they know, and people they know, which is why I am posting this message.

Other ways to support Aria's cause are :

Bank deposit:
KIDS Foundation / Aria MacDonald Appeal Account
12-3032-0253524-00

Text:
Text HELP ARIA to 469 to donate $3. 100% of the $3 goes directly to Aria’s fund.

Cheque:
KIDS Foundation
PO Box 75-076
Manurewa
Auckland
New Zealand
(Please mark clearly on the back it is for the Aria MacDonald Appeal)

Spreading the word:
If everyone in New Zealand gave 50c to Aria’s cause it would cover the cost of the operation. The more people who know the better.

If you do donate money to Aria’s cause, you can get a tax receipt by using the form on Aria’s website – www.aria.org.nz

Schmanks!

[Bekki]

100% of the money Rebecca raises goes to Aria's operation too, just in case that isn't clear above. My brother will paying all their bills for the next little while.

[Maha]

My Eldest Daughter was born with Hirshchsprungs and had an operation at 18months to repair the affected area. She is now 18 years old and still has to do a washout several times a week. It was bloody tough in the begining, to have a new born with a colostomy and also sleep apnia but we got through it. Had never heard of this condition up until then and all of a sudden there seemed to be a few out there. One family in (Westport I think?) had three kids with it. My then wife and daughter were on a television programme about it in the mid 90's. Good luck to all concerned with this fundraiser and I hope it all turns out ya.

[Bekki]

Thanks Maha!

It sounds like your daughter's surgery worked miracles

I get the idea that usually with Hirshchsprungs Disease a portion of the bowel is unable to move food along / absorb food and the affected portion can be removed with surgery.. is that right?

And 'Total Hirshchsprungs Disease' like Aria has is the same condition but the entire bowel is affected so the only option is a complete bowel transplant.

She seems to be a pretty happy little kid despite everything!

[Big Dan]

Good luck mate i'd help out if a could but i'm short on cash sorry

hope shes gets her Op

Take care and to family
Dan

[Maha]

I get the idea that usually with Hirshchsprungs Disease a portion of the bowel is unable to move food along / absorb food and the affected portion can be removed with surgery.. is that right?

That is correct Bekki, and also males have high sucsses rate of recovery so the Surgeon told us, My Daughters operation was done by Dr Stuart Brown at Waikato, the operation he did back then was called the Suave' (swar vay) procedure, in which he cut away the part of bowel that was of no use and sleeved the remaining bowel back together, they used to just stitch the bowel back together, this was in 1991 so things may have change since then even. What Aria needs is horrendously different and the cost is staggering, long long road ahead for that little girl.

[riffer]

Tough road to travel...

We finally had Hirschsprung's eliminated as a cause of our eldest son's troubles last year - after a number of operations. It turned out to be Coeliac disease coupled with an abnormally tight sphincter which caused a distended bowel and stuffed up the nerves (tore them) causing a Hirschsprung's condition. He's under constant threat of the washout plug however.

I remember the angst I felt while reading about the condition. My thoughts with you all. Well done to Rebecca - a cause worth helping.

[ynot slow]

Txt sent,good to have freephone on it too.

Shit sorry for the family.My daughter just had her large bowel removed before xmas,and surgery after to re-attach bowel back to small bowel,hopefully she is ok.Gene from me means she was prone to bowel cancer,so to remove at 18yrs hopefully means she won't get cancer,unlike me.


All the best Aria and family,and Rebecca.

[ynot slow]

My Eldest Daughter was born with Hirshchsprungs and had an operation at 18months to repair the affected area. She is now 18 years old and still has to do a washout several times a week. It was bloody tough in the begining, to have a new born with a colostomy and also sleep apnia but we got through it. Had never heard of this condition up until then and all of a sudden there seemed to be a few out there. One family in (Westport I think?) had three kids with it. My then wife and daughter were on a television programme about it in the mid 90's. Good luck to all concerned with this fundraiser and I hope it all turns out ya.

Can understand how you must have felt,hard to understand procedure and what is involved with bowel cancer/tumour as an adult,let alone a child,that's why I have admiration for my daughter having had her bowel(lge) removed and getting used to a bag short term,hopefully now she will be ok,18 yr olds don't need this crap.Neither do children,or their families.

[Mom]

He's under constant threat of the washout plug however.
I remember the angst I felt while reading about the condition. My thoughts with you all. Well done to Rebecca - a cause worth helping.

We held hopes for Sam to be able to stop using the wash out, and she certainly wanted to be able to have the ACE reversed, but unfortunately it was not to be. I was talking to a woman the other day, her son had big issues like your son when he was born, and for several years as he matured. He got through with out the wash out step. Best of luck for your young fella.

Can understand how you must have felt,hard to understand procedure and what is involved with bowel cancer/tumour as an adult,let alone a child,that's why I have admiration for my daughter having had her bowel(lge) removed and getting used to a bag short term,hopefully now she will be ok,18 yr olds don't need this crap.Neither do children,or their families.

She sounds like a top girl mate! Takes a fair bit of courage to take a step like that I am certain. I remember many conversations with Sam about how she would ever get a boyfriend being as she was, sometimes she needs to wear a bag. It really was a biggie for her. I explained that any bloke worth knowing would not care. She has a lovely young man with her now.

Sending my Mom love out to you both.

[ynot slow]

She sounds like a top girl mate! Takes a fair bit of courage to take a step like that I am certain. I remember many conversations with Sam about how she would ever get a boyfriend being as she was, sometimes she needs to wear a bag. It really was a biggie for her. I explained that any bloke worth knowing would not care. She has a lovely young man with her now.

Sending my Mom love out to you both.

Thanks,yep bloody hard,especially as in my case I was asked to do genetic tests due to my age,they found the gene and 1 daughter is fine other is a carrier,hence her removal,at moment she is good,they operated by keyhole,she has 4 small scars,not a big one like I have,which helps as she can wear a bikini if she wants,without scars.Tough kid? You bet and stubborn at times,wonder who gave her that gene?Still I look around and am alive,my handicap,if you call it that,is minor to others out there.Always someone worse off than me.

[Bekki]

I've just been reading on the internet about what "wash out" means and more about the experience of living with a stoma etc.

Wow. One commonality in the stories is the extraordinary strength of character involved.

ynot.. your daughter sounds incredibly brave and mature.

Mom.. it's nice to hear that you approve of Sam's boyfriend!

[ynot slow]

She is brave,and intelligent and level headed,well she turned 18 last week and has been enjoying going to bars.She liked the idea of buying a rtd on her own hehe.

Tough road to get by for an infant though and parents,sad to say sometimes it can make or break a family.Till anyone has been there done that and got the dvd,you don't understand the aingst.