Which charity?

crazy cat lady

I'm doing the Flora womans mini marathon in June and want to raise money for a childrens charity.

I know all the big charities, i'm just wondering if anyone knows of any smaller worthwhile causes? 'Little Jimmy needs to raise money to go to America to be able to walk' type charities.

Suggestions in boxes below please

dublinlady

crazy cat lady wrote: »

I'm doing the Flora womans mini marathon in June and want to raise money for a childrens charity.

I know all the big charities, i'm just wondering if anyone knows of any smaller worthwhile causes? 'Little Jimmy needs to raise money to go to America to be able to walk' type charities.

Suggestions in boxes below please

I dont know of any but well done you!

Lola92

Operation Elie, facebook page here.

I first heard this little girls story on the radio maybe 8 months ago. She has been through so much as she was born with no oesophagus. She has a twin sister who thankfully is healthy but facing into Elie's 10th operation they need funds for her mother, grandmother and sister to be able to stay in the US to complete her treatments. Her Dad is in Ireland working to try and support them.

Hello we are the ‘E family’. My name is Esti and my fiances name is Eddie. We are the proud parents of our first born twin girls Elissa and Ema born the 6th October 2010. We call them Elie and Emie.

Where to begin? 11 weeks into our pregnancy, a problem with one of the babies was discovered. We had a scan, while on holiday in Poland. During the scan, the doctor said , there is a problem with one of your babies. From then on our holiday was turned into a research project, because of the results of the scan, we had a full amniocentesis performed. We crammed in as many clinic and hospital appointments as we could, so that when we returned to Ireland we were armed with as much information as possible so that we could help our baby.

We had checkups approximately every two weeks until our doctor at the Rotunda Hospital decided it was time for the babies to be delivered or run the risk of losing one of them. The babies were delivered the next day by caesarean section. Straight away they were separated, with Elie being taken away in an incubator to ICU, she was later transferred to the ICU in Our Lady’s Children’s Hospital, Crumlin. She spent the next nine months in Crumlin, as the doctors and nurses discovered a series of complications.

Elie proved to be a little fighter. She weighed only 1.74kg when she was born. She has been diagnosed with "Tracheo-Oesophageal Fistula with Long Gap Oesophageal Atresia". This means that Elie’s oesophagus does not join up with her stomach and so she is unable to swallow. This could not be repaired at the time because the gap was approximately 5 cm long.

Elie cannot swallow or eat, which is why she had an operation when she was one day old to place a gastronomy tube, so she could be fed directly into her stomach. She has a continuous suction tube in her nose that goes down her throat into an upper pouch in her oesophagus. This tube is helping Elie to not choke on her saliva and various other secretions.

Elie also had heart problems among other issues which have led to various operations. After several failed extubations she was diagnosed with severe posterior tracheomalacia and a tracheostomy was performed in December, 2010. After almost three months we were moved from ICU to the Transitional Care Unit. Finally she had a chance to have her first bath, spend some time with her twin sister and just ‘be’. After so many weeks in intensive care it was like a breath of fresh air. Even with all of the things that Elie has been through she could finally be just a baby… as much as possible, with all of the tubes and wires that she needs to live.

Doctors hoped that the gap between the two ends of her oesophagus would get smaller but unfortunately that did not happen. After several months we decided to take her home to join her sister. We knew how enormous that challenge would be, but we did not see any other option. We wanted to have Elie home. Nine months on, Elie has been discharged from hospital, as far as we are aware she is the first baby in Ireland to be discharged with an un-repaired oesophagus.

To have both babies home is incredible, because we were told at the beginning Elie could be in hospital for as long as two years. To see them together, they are so excited to be in the same room. It’s like they have never been apart for that length of time. It’s amazing to just see them together.

Elie is at constant risk, infections are an enormous fear for us every day. As she gets older, she is becoming increasingly aware of the tubing in her nose and regularly tries to pull it out. This only increases the risk of aspiration and infection. She requires ours, and a trained carer’s constant supervision.

Elie requires surgical intervention to join the two ends of her oesophagus. Unfortunately her gap is too long and she cannot be treated in Ireland or in Europe. The only treatment available here would involve a replacement or pulling her stomach up, which would condemn Elie to a lifetime of medication and complications. This could lead to long term peg feeding, poor weight gain or anaemia. She would require multiple procedures and future hospitalisations, chronic reflux and respiratory problems together with tracheostomy issues. There is also very high risk of developing esophageal cancer.

There is an Oesophageal Advanced Treatment Center, in Boston, which uses the Foker technique. This procedure would allow Elie’s oesophagus to be repaired rather than replaced. This procedure is essentially the closest thing to a full cure and would give her a quality of life that would free her from the all complications associated with options available in Europe. We think that’s the only right choice for her to be healthy and not be disabled for the rest of her life. Despite her trauma, she is the happiest child in the world; she deserves this chance to be healthy.

Doctors in Boston are satisfied that Elie is a good candidate for this surgery. Also, our Consultant Paediatric Surgeon is more than supportive that the Foker technique is the only viable option for Elie.

We have applied to HSE and VHI for funding but if they do agree to pay, they will only pay the basics. We do not know how much money the whole procedure will incur that is why we started ‘Operation Elie’. Given the current climate and the cuts HSE has made to date we need to take action into our own hands. We would appreciate any sort of help to get our baby girl to Boston. If you think you can help either financially or as a volunteer or simply have an idea how to generate funding – please let us know.

__________________________________________________________________
Sept 30th 2011 update

We are very pleased to announce that the medical expenses will now be covered by state funding & private insurer. There are still, however, the living and travel expenses to be covered. Funds raised through Operation Elie will go toward keeping Elie and her family in accommodation in Boston for as long as required for her to have her surgeries and aftercare. This could be anything from 3 to 6 months. Any surplus funds raised will be donated to a similar childrens charity. We will keep you updated on funding and Elie's progress.

Our current target for fundraising is 20,000 dollars.

This should cover accommodation, living and transport expenses for 4 months in Boston. However, should the outcome of Elie's surgeries not go to plan, we may need to stay longer there with her. We will keep you updated at all times on our target.

Many thanks for your continued support.

Just to add I have no connection to this family but their story really touched my heart.

Ayla

Good for you! One of my favourite charities is http://www.make-a-wish.org.uk/

Orion

http://www.barretstown.org/. I know people personally who've been there and it's an amazing charity.

Or you could go to basics - Crumlin Children's Hospital is seriously underfunded. If it was funded properly there would be no need for some of the child-specific fundraising.

Hannibal Smith

crazy cat lady wrote: »

I'm doing the Flora womans mini marathon in June and want to raise money for a childrens charity.

I know all the big charities, i'm just wondering if anyone knows of any smaller worthwhile causes? 'Little Jimmy needs to raise money to go to America to be able to walk' type charities.

Suggestions in boxes below please

Have you heard of Operation Eli? They were twins born early, one was born with an oesophugus (sp) that didn't join up properly, usually they repair themselves apparently, but this little ones never did.

Here's the link to the website...she seems to have had the operation in Boston, so I'm not sure if the fundraising is still ongoing....but I know the operations are so maybe any help they get would be welcome?


Snap lola!
http://www.eliemadden.com/Site/About_Elie.html

cynder

Doing the flora mini marathon for diabetes (as my daughter age 12 has it since age 7). My friend is doing it with me and is doing it for CF as her 3 year old has CF.


I beleive some do it for crumlin hospital or temple street, there is also make a wish, children to lapland,

Jack and Jill Foundation
Baby max appeal (meningitis / hospital equipment)
Ronald mc donald house (houses parents of sick children, while the child stays in hospital)
Ispcc

Laura lynn home , http://www.sunshinehome.ie/about.html
There are also ones for autism. e.g. autism ireland




most are on here:
http://www.florawomensminimarathon.ie/charity/charity-list.192.html




Baby ellen http://www.facebook.com/ellenbarronmcgee?sk=info she is from portlaoise. more info on her condition http://www.dublinpeoplewebdesign.com/article.php?id=933

caprilicious

Fair play to you doing the marathon CCL, I'd keel over at the thoughts of walking to the car at the moment, never mind running anywhere

Some great suggestions already, definitely second Crumlin hospital after seeing the prime time programme during the week about the state of the facilities there

crazy cat lady

Thanks for all your replies.

Orion wrote: »

Or you could go to basics - Crumlin Children's Hospital is seriously underfunded. If it was funded properly there would be no need for some of the child-specific fundraising.

This is so true! This is why I have chosen to raise money for Temple Street Childrens Hospital, and my mother-in-law is raising money for Crumlin.

If anyone would like to sponsor me, please feel free to click the link below
http://www.mycharity.ie/event/hannakelly

Thanks in advance