Shay and Finn
Donation protected
Shay and Finn Guihen (affectionately known as ShayShay and Finny) are 9 year old identical twin boys. They were born with a condition known as Pfeiffer Syndrome Type III: a rare genetic disorder causing a number of very challenging and life limiting disabilities.
Born in October 2011, the boys prognosis was poor and they were not expected to survive into the new year.
They required multiple, severe surgeries to maintain life in the first year, including those to fit their tracheostomies (through which they breathe) and several craneofacial surgeries to unlock their growing and swelling brains. These surgeries required their skulls to be "broken" and parts of the skull removed to create gaps for expansion of the brain. The surgeries were long and relentless, yet the boys survived them all.
They spent the first 2 years of their life in Temple Street Hospital, waiting for their 24/7 Home Care Package to be sanctioned and staffed by the HSE so they could be brought home permanently. They eventually came home 3 days short of their 2nd birthday...
Unfortunately the Home Care Package failed very quickly and after just 3 months the boys had to be brought back to Temple Street Hospital as the parents simply could not continue to bridge the huge gaps in nursing care that appeared almost immediately. With a new baby- brother Riley, arriving just 6 weeks after Shay and Finn came home, the level of care was too much for two parents alone to cope with.
The boys were then transferred to the Laura Lynn Hospice for an 8 weeks emergency respite term, while the Home Care Package was resolved, however it took 2 and half years....
The boys were now back home permanently with Denise and Dermot and they were delighted to have their family finally together again all under one roof.
The last 3 years had been a constant round of collections and returns of the boys between home and hospital/hospice for just a day or two at a time, 2 or 3 times a week. The need for sleep after covering 48 hours of continuous care was the longest they could manage. There was no support at home and inevitably the parents had to return their children. It was exhausting, grueling and utterly devastating not to be able to keep their children at home due to the catastrophic gaps in nursing care but the parents were determined to ensure that the boys did not feel abandoned, unloved or scared and to ensure that the family bond was kept strong and that the boys felt and knew that their Mommy and Daddy loved them and would always come back to take them home.
In December 2017, the boys were admitted to hospital with severe chest infections. They recovered in a few weeks but did not get home permanently until 11 months later - because of gaps in the Home Care Package. ....
The GoFundMe page is to support private nursing care to resolve these huge gaps in the nursing cover that is ongoing and has had catastrophic impact on the lives of the whole family and especially Shay and Finn.
This round the clock care, though given with much love, is fiercely demanding and relentless.
There is no option for the parents to be sick or have a break away, not even a night at the movies. Support by way of donations, however small, to pay for private nursing care at home would be a dream come true.
Denise and Dermot, the loving parents could really do with a few hours break from the 24/7 demands of caring for the boys and maybe a little time to spend together as a couple. They’re not looking for a luxury holiday away from their boys just maybe an hour here or there would mean the world to them and to the boys little brother Riley.
Private nursing care would make them feel at ease if they were to step out of the home for an hour knowing their boys were in the hands of professionals who know how to take care of them in their absence.
Thank you for taking the time out to complete the reading of this notice. Please feel free to share it with your friends. If you'd like to see them in action click here
Born in October 2011, the boys prognosis was poor and they were not expected to survive into the new year.
They required multiple, severe surgeries to maintain life in the first year, including those to fit their tracheostomies (through which they breathe) and several craneofacial surgeries to unlock their growing and swelling brains. These surgeries required their skulls to be "broken" and parts of the skull removed to create gaps for expansion of the brain. The surgeries were long and relentless, yet the boys survived them all.
They spent the first 2 years of their life in Temple Street Hospital, waiting for their 24/7 Home Care Package to be sanctioned and staffed by the HSE so they could be brought home permanently. They eventually came home 3 days short of their 2nd birthday...
Unfortunately the Home Care Package failed very quickly and after just 3 months the boys had to be brought back to Temple Street Hospital as the parents simply could not continue to bridge the huge gaps in nursing care that appeared almost immediately. With a new baby- brother Riley, arriving just 6 weeks after Shay and Finn came home, the level of care was too much for two parents alone to cope with.
The boys were then transferred to the Laura Lynn Hospice for an 8 weeks emergency respite term, while the Home Care Package was resolved, however it took 2 and half years....
The boys were now back home permanently with Denise and Dermot and they were delighted to have their family finally together again all under one roof.
The last 3 years had been a constant round of collections and returns of the boys between home and hospital/hospice for just a day or two at a time, 2 or 3 times a week. The need for sleep after covering 48 hours of continuous care was the longest they could manage. There was no support at home and inevitably the parents had to return their children. It was exhausting, grueling and utterly devastating not to be able to keep their children at home due to the catastrophic gaps in nursing care but the parents were determined to ensure that the boys did not feel abandoned, unloved or scared and to ensure that the family bond was kept strong and that the boys felt and knew that their Mommy and Daddy loved them and would always come back to take them home.
In December 2017, the boys were admitted to hospital with severe chest infections. They recovered in a few weeks but did not get home permanently until 11 months later - because of gaps in the Home Care Package. ....
The GoFundMe page is to support private nursing care to resolve these huge gaps in the nursing cover that is ongoing and has had catastrophic impact on the lives of the whole family and especially Shay and Finn.
This round the clock care, though given with much love, is fiercely demanding and relentless.
There is no option for the parents to be sick or have a break away, not even a night at the movies. Support by way of donations, however small, to pay for private nursing care at home would be a dream come true.
Denise and Dermot, the loving parents could really do with a few hours break from the 24/7 demands of caring for the boys and maybe a little time to spend together as a couple. They’re not looking for a luxury holiday away from their boys just maybe an hour here or there would mean the world to them and to the boys little brother Riley.
Private nursing care would make them feel at ease if they were to step out of the home for an hour knowing their boys were in the hands of professionals who know how to take care of them in their absence.
Thank you for taking the time out to complete the reading of this notice. Please feel free to share it with your friends. If you'd like to see them in action click here
Organizer
Denise Nolan
Organizer
County Kildare
