Head Shave for Jack & Jill Children's Foundation
Donation protected
I am doing a head shave in aid of Jack and Jill Childrens Foundation in recognition of all the ways they helped us. My wife wants the beard gone - she cant stand it - but doesn't like the idea of a head shave so I may need a volunteer to hold the blade, largest donation .
Every €16 collected pays for 1 full hour of world class care of terminally ill / critically ill kids in the family home. My aim is to collect a min of 40 hours nursing time. I am asking you to sacrifice the price of a pizza /bottle of wine.
While this Charity performs life saving work, it does not receive any funding from the government. All its costs have to be funded through donations and fundraising. If you cannot afford to donate, please like and share on social media ( Facebook, Linkedin, Twitter) or by setting up your own event to raise funds for this amazing charity.
These are real front line workers that continued through COVID19 caring for really sick kids. Donations are way down because of COVID, which is why I am stepping up now.
About us:
It wasn't until we were leaving the excellent care of the Paediatric ICU and the High Dependency Units of University Hospital Waterford that we were told about Jack & Jill. I had no idea who they were or what they did until that point. Our introduction was necessary because of the catastrophic diagnosis and prognosis that we were given.
It was gut wrenching, particularly because this was a bolt from the blue. A perfect pregnancy with no complications until the due date. An emergency delivery was needed (as a Dad I never want to see one of these procedures again). The medical team were excellent. Saoirse was born at 5:30pm, there was no cry. Her skin was grey, eyes were dark. We saw her for seconds and they went to resuscitate her. We saw her again at midnight and was baptised at 1am as we were told she wouldn'tt last the night
After weeks in hospital, after various tests and MRIs we were given the diagnosis. In addition to the Cerebral Palsy arising from a reverse-transfusion, starving the brain of blood & oxygen, Saoirse was also diagnosed with Microcephaly Lissencephaly (also know as small brain smooth brain syndrome). We were told this is extremely rare and they kept saying we were very unlucky and that its a long road. The prognosis was that Saoirse would be crippled for life, was clinically diagnosed deaf and blind, and would not have the social gaze that normally exists between mother and child. There'd be global developmental delays. Her poor suck-swallow ability meant that she would be tube-fed for life and even though we were making efforts to feed, we were told that this would regress and we would end up tube feeding. Ultimately this would lead to chest infections, pneumonia and countless visits to hospital and that she would die within 2 yrs. In addition she would have 80/90 seizures a day, the medication to suppress these would completely subdue her placing her in a vegetative state. She also had a collapsed lung, and an under-developed lung, a twisted & curved spine (later referred to as Scoliosis) Her arms and legs were very stiff and barely moved and her circulation was so poor that her hands and feet were cold and purple most of the time.
In the earlier months we would take it in turns to sleep sitting upright at night with her over our shoulders so that she would not choke on her saliva as her breathing was so poor. Our house was in lock-down. We couldn't risk visitors coming to the house and bringing a cold etc., so family help was limited. Sinead's mum was a great help, my mum too, however we were also looking after Sinead’s dad who had been diagnosed with FTD (frontotemporal dementia ), which brought its own challenges. We rarely took Saoirse outside during in her first 12 months and feeding could take hours. However, Jack and Jill provided us with a monthly allowance of hours from highly trained Paediatric ICU nurses that would come into our home when we needed them. The nurses became part of the family, loved our kids and cared for them and us. We used the time simply to get sleep, go to the shop, bring the other kids out for some fun time, normal stuff, nothing exciting, but absolutely necessary. Our liaison nurse would also help us understand the medical jargon and help us with/ prepare for the many appointments we needed to attend. They were also there just to chat with which helped us cope with what we had to handle. There are many more families like ours receiving devastating news about their child and realizing that there is no help available from the public heath system. As bad as we had it there was always a family in a worse position.
On a brighter note, we have since graduated from Jack and Jill as they only have funding to look after kids up until the age of 4.
When you hit rock bottom you tend to get a real wake up call. My family and I had no where else to turn except we learned to say prayers again and we turned to Christ. Since then, we are absolutely blessed to have experienced what we did, and to have received so many healings and miracles along the way, thanks be to God. Saoirse is nearly nine now, and can see and hear. She feeds herself by spoon and by a glass. Her general health is as good if not better than our other kids. She is not and has never been on any medication and has never had any procedures. She has not had a seizure in 8 years. The holes in her heart are all cleared up. Her lungs are perfect. Her spine is straight. She has a wheelchair however she is walking now most of the time. Doctors have removed the diagnosis of blindness and deafness,?and confirmed that there is no medical reason why she won’t walk and that there is no evidence is scoliosis. She is very engaging and communicative. She has some words and uses hand signals and loves to be with others, playing on her ipad or any device (if you ever call over hide your phone!), watching TV, music, parties, and going to school, so we are expecting full mobility and full speech to follow.
Among these miracles I have no doubt is meeting up with the wonderful people at Jack and Jill, who gave us the gift of time out, to recover mentally, emotionally, as a couple and as a family, because there are other kids in a J&J family, who simply don’t get their fair share of a parents time. Please support this charity.
Thank you for listening.
Jim
Every €16 collected pays for 1 full hour of world class care of terminally ill / critically ill kids in the family home. My aim is to collect a min of 40 hours nursing time. I am asking you to sacrifice the price of a pizza /bottle of wine.
While this Charity performs life saving work, it does not receive any funding from the government. All its costs have to be funded through donations and fundraising. If you cannot afford to donate, please like and share on social media ( Facebook, Linkedin, Twitter) or by setting up your own event to raise funds for this amazing charity.
These are real front line workers that continued through COVID19 caring for really sick kids. Donations are way down because of COVID, which is why I am stepping up now.
About us:
It wasn't until we were leaving the excellent care of the Paediatric ICU and the High Dependency Units of University Hospital Waterford that we were told about Jack & Jill. I had no idea who they were or what they did until that point. Our introduction was necessary because of the catastrophic diagnosis and prognosis that we were given.
It was gut wrenching, particularly because this was a bolt from the blue. A perfect pregnancy with no complications until the due date. An emergency delivery was needed (as a Dad I never want to see one of these procedures again). The medical team were excellent. Saoirse was born at 5:30pm, there was no cry. Her skin was grey, eyes were dark. We saw her for seconds and they went to resuscitate her. We saw her again at midnight and was baptised at 1am as we were told she wouldn'tt last the night
After weeks in hospital, after various tests and MRIs we were given the diagnosis. In addition to the Cerebral Palsy arising from a reverse-transfusion, starving the brain of blood & oxygen, Saoirse was also diagnosed with Microcephaly Lissencephaly (also know as small brain smooth brain syndrome). We were told this is extremely rare and they kept saying we were very unlucky and that its a long road. The prognosis was that Saoirse would be crippled for life, was clinically diagnosed deaf and blind, and would not have the social gaze that normally exists between mother and child. There'd be global developmental delays. Her poor suck-swallow ability meant that she would be tube-fed for life and even though we were making efforts to feed, we were told that this would regress and we would end up tube feeding. Ultimately this would lead to chest infections, pneumonia and countless visits to hospital and that she would die within 2 yrs. In addition she would have 80/90 seizures a day, the medication to suppress these would completely subdue her placing her in a vegetative state. She also had a collapsed lung, and an under-developed lung, a twisted & curved spine (later referred to as Scoliosis) Her arms and legs were very stiff and barely moved and her circulation was so poor that her hands and feet were cold and purple most of the time.
In the earlier months we would take it in turns to sleep sitting upright at night with her over our shoulders so that she would not choke on her saliva as her breathing was so poor. Our house was in lock-down. We couldn't risk visitors coming to the house and bringing a cold etc., so family help was limited. Sinead's mum was a great help, my mum too, however we were also looking after Sinead’s dad who had been diagnosed with FTD (frontotemporal dementia ), which brought its own challenges. We rarely took Saoirse outside during in her first 12 months and feeding could take hours. However, Jack and Jill provided us with a monthly allowance of hours from highly trained Paediatric ICU nurses that would come into our home when we needed them. The nurses became part of the family, loved our kids and cared for them and us. We used the time simply to get sleep, go to the shop, bring the other kids out for some fun time, normal stuff, nothing exciting, but absolutely necessary. Our liaison nurse would also help us understand the medical jargon and help us with/ prepare for the many appointments we needed to attend. They were also there just to chat with which helped us cope with what we had to handle. There are many more families like ours receiving devastating news about their child and realizing that there is no help available from the public heath system. As bad as we had it there was always a family in a worse position.
On a brighter note, we have since graduated from Jack and Jill as they only have funding to look after kids up until the age of 4.
When you hit rock bottom you tend to get a real wake up call. My family and I had no where else to turn except we learned to say prayers again and we turned to Christ. Since then, we are absolutely blessed to have experienced what we did, and to have received so many healings and miracles along the way, thanks be to God. Saoirse is nearly nine now, and can see and hear. She feeds herself by spoon and by a glass. Her general health is as good if not better than our other kids. She is not and has never been on any medication and has never had any procedures. She has not had a seizure in 8 years. The holes in her heart are all cleared up. Her lungs are perfect. Her spine is straight. She has a wheelchair however she is walking now most of the time. Doctors have removed the diagnosis of blindness and deafness,?and confirmed that there is no medical reason why she won’t walk and that there is no evidence is scoliosis. She is very engaging and communicative. She has some words and uses hand signals and loves to be with others, playing on her ipad or any device (if you ever call over hide your phone!), watching TV, music, parties, and going to school, so we are expecting full mobility and full speech to follow.
Among these miracles I have no doubt is meeting up with the wonderful people at Jack and Jill, who gave us the gift of time out, to recover mentally, emotionally, as a couple and as a family, because there are other kids in a J&J family, who simply don’t get their fair share of a parents time. Please support this charity.
Thank you for listening.
Jim
Organizer
Jim Fitzmaurice
Organizer