Jayden Conway's Journey
Donation protected
My name is Carmel, I am very impressed by neighbor Jayden. I would like everyone to share the word about Jayden's journey. I wanted to help out in some way and with the consent of Jayden’s mother, I decided to set up this go fund me.
Jayden is a beautiful, caring and positive 13 year old boy. He is fighting battles no child ever should and has been fighting them since the day he was born. He was born 18/11/2008 and they discovered he has a heart condition and needed open heart surgery at 3 months old for pulmonary stenosis. He had such a long road to recovery and it was terrible to see him in such pain. He was born with a condition called Nephrotic Syndrome. After a lot of tests and biopsy it was discovery it was a rare type of FSGS podocin Gene type. He spend years attending his local hospital for albumin infusions and having care in Crumlin too for appointments. He had to have a lot of operations through out this time for broviac lines and implants fix, kidney removal and more.
His body would swell up and down from his albumin leak through his kidneys that he got an inguinal hernia that needed repairing. After 9 long years of keeping him ticking over with the albumin infusions 2 days before his 9th birthday he had his first nephrectomy which is a kidney removed. He continued with one kidney and a lot of meds to take to keep him going, he has been taking all of meds since birth, and today still takes an awful lot of medication.
Last May (2021) Jayden had to start PD dialysis, Nuala and Denis were trained up and he currently on this 11 hours per night. He just had his second kidney removed and his body is trying to adjust to the change, blood pressure issues. Jayden has been absolutely amazing dealing with all that's thrown at him over the years. He has had 12 operations to date and more to follow. Jayden will need a kidney and two of Nuala's brothers went forward and unfortunately could not donate due to issues of their own health. Nuala's partner Denis is currently being tested and we are hopeful for good results.
Jayden is having a very tough time recently requiring a lot of hospital time which has a huge cost like paying the Accommodation, Food, Respite for Jayden along with the burden cost of travel and medications, along with other unforeseen costs that can arise such as car issues as the car is old and needs a lot of tlc etc.. The hospital is 380 KM round trip from Jayden's home.
He is only allowed 650 mls per day and that's for all foods and fruits he met have too being included in this allowance. He has to be on a strict low potassium and low phosphate diet so even meal has to be carefully considered.
After he gets his transplant it will be huge amount of hospital visits a week in Dublin Templestreet for approx. 1.5 to 2 years for at least 3 days a week and they have a good distance to travel of over 4 hours round trip. I wanted to set up this Go Fund me as I got to know Jayden and his family very well as we are now neighbors and I can see how much effort work and time goes it. I truly feel they deserve a helping hand to help take the stress out of an unbelievably stressful situation.
A fund to help them to give him a better quality of life while he is going through so much. Any donation big or small will be hugely appriciated.
Jayden is a beautiful, caring and positive 13 year old boy. He is fighting battles no child ever should and has been fighting them since the day he was born. He was born 18/11/2008 and they discovered he has a heart condition and needed open heart surgery at 3 months old for pulmonary stenosis. He had such a long road to recovery and it was terrible to see him in such pain. He was born with a condition called Nephrotic Syndrome. After a lot of tests and biopsy it was discovery it was a rare type of FSGS podocin Gene type. He spend years attending his local hospital for albumin infusions and having care in Crumlin too for appointments. He had to have a lot of operations through out this time for broviac lines and implants fix, kidney removal and more.
His body would swell up and down from his albumin leak through his kidneys that he got an inguinal hernia that needed repairing. After 9 long years of keeping him ticking over with the albumin infusions 2 days before his 9th birthday he had his first nephrectomy which is a kidney removed. He continued with one kidney and a lot of meds to take to keep him going, he has been taking all of meds since birth, and today still takes an awful lot of medication.
Last May (2021) Jayden had to start PD dialysis, Nuala and Denis were trained up and he currently on this 11 hours per night. He just had his second kidney removed and his body is trying to adjust to the change, blood pressure issues. Jayden has been absolutely amazing dealing with all that's thrown at him over the years. He has had 12 operations to date and more to follow. Jayden will need a kidney and two of Nuala's brothers went forward and unfortunately could not donate due to issues of their own health. Nuala's partner Denis is currently being tested and we are hopeful for good results.
Jayden is having a very tough time recently requiring a lot of hospital time which has a huge cost like paying the Accommodation, Food, Respite for Jayden along with the burden cost of travel and medications, along with other unforeseen costs that can arise such as car issues as the car is old and needs a lot of tlc etc.. The hospital is 380 KM round trip from Jayden's home.
He is only allowed 650 mls per day and that's for all foods and fruits he met have too being included in this allowance. He has to be on a strict low potassium and low phosphate diet so even meal has to be carefully considered.
After he gets his transplant it will be huge amount of hospital visits a week in Dublin Templestreet for approx. 1.5 to 2 years for at least 3 days a week and they have a good distance to travel of over 4 hours round trip. I wanted to set up this Go Fund me as I got to know Jayden and his family very well as we are now neighbors and I can see how much effort work and time goes it. I truly feel they deserve a helping hand to help take the stress out of an unbelievably stressful situation.
A fund to help them to give him a better quality of life while he is going through so much. Any donation big or small will be hugely appriciated.
Organizer and beneficiary
Carmel Byrne
Organizer
Nuala Conway
Beneficiary