Kennedy Family Trust

€1,255 of €150,000 goal

Raised by 20 people in 28 days
38042080_1554307104368452_r.jpegA recent picture of Noel at the Mater Hospital:

My name is Valerie Kennedy, I am desperately trying to source funding to extend our small family residence to make it wheelchair accessible, with downstairs bedrooms and bathrooms to make our home suitable and safer for my husband Noel and my son Adam.

Noel is presently in the Mater Private Hospital in Dublin, he is after a valve replacement which is a straight forward operation for most, but for Noel it was his last chance for life. He has a long road ahead, he has about 10% mobility, and he cannot carry out any of the aspects of everyday life without help.

Noel will always be blood transfusion dependent, there will always be setbacks, but this surgery has added more years to his life.

Adam is 14 years old.  He was born with Achondroplasia, later diagnosed with Autism, and then Epilepsy.

 Adam is non verbal, is toilet trained by day, but wets the bed by night, needs constant supervision, and help with all aspects of everyday life.  He has no sleep routine; he often starts his day between 2-3 am this could continue for 3-4 nights.   Adam wets the bed at night.   Noel sweats alot during the night, the two beds have to be changed several times during the night.  The washing machine never stops. 

Adam has reached puberty, he can’t understand the changes to his body or express himself verbally, and he lashes out by punching his head and jaw which are permanently black and blue.  Because things are changing down below, he takes his clothes off because he doesn't feel comfortable in his own skin.  One tantrum caused mild concussion, leaving him dazed and confused.  It also caused numbness to his head where he began pulling out his hair.   He can’t be left unsupervised in case he hurts himself.

 Noel’s health got worse over the years. We turned his small downstairs office into a bedroom; the bathroom downstairs is far from suitable to his needs now.  Adam sleeps upstairs and Noel downstairs leaving me on a sofa in the hallway.  It would make life so much easier if I could get two bedrooms suitable to their individual needs. 

We are unable to work and the careers allowance is a far cry from a weekly wage.  We have a grant of 30,000.  This won’t cover the two bathrooms not to mention two bedrooms and the changes to make the house wheelchair friendly.

Noel has VRE;   a virus in his gut which means he is resistant to some antibiotic.   Adam cannot contract this with all his health issues.

Noel is best known in Sligo for his work with the Sligo Weekender newspaper. 
He worked as a youth worker with the North Connaught youth Service, joined Kerry Foods covering Longford, West Cavan, East Sligo, Letterkenny and West Donegal,
 and Duffy's Bakery where he covered the Connaught Area.
We met when he started working with Keane's Wholesale Ltd., in Ennis, Co. Clare. 
He left Ennis to pursue a lifelong dream of becoming a photographer and starting his own business doing wedding, commercial, P.R, and press photography.

I left Ennis to join Dunne’s stores as a trainee manager; I transferred from Sligo, to Athlone where Noel and I met again.  We got engaged, married on the 29th November 2003 in the Woodlands House Hotel in Adare, Co. Limerick.  It was a wonderful day. Our first child Adam was born on the 14th October 2004. 

We were very excited about being pregnant with our first child, my first scan, showed abnormalities.  After several scans we realized our baby would be born with Achondroplasia (Dwarfism). 

Adam was a tiny baby,   just under 4 lbs weight, his baby clothes were XX Small.  There was a high risk of cot death for the first 6 to 9 months.   He did not sleep or feed well.  There was a lot of stress over the first 12 months.  Adam needed Physiotherapy every day to help him walk. There were lots of hospital visits and by this time it was becoming clear he wasn’t meeting his mile stones. 

Adam was assessed under the Assessment of Need at three years of age. Two days before Christmas Adam was diagnosed with Autism.  We were told he would never have a conversation with us;   all we had to do was take care of his basic needs.  Later we discovered he was deaf.  Four sets of grommets, lots of antibiotics and infections Adam got his hearing back.
New sounds and smells lead to sensory issues, he began vomiting when he got the smell of food, and was terrified of loud sounds.  It became increasingly difficult to go out and into public places and restaurants.   
38042080_155430583329364_r.jpegAdam during one of his stays in Temple Street

Adam was five and in the Holy Family School, when I got the phone call that Adam was in ICU in the Sligo General, he had suffered a major seizure, he was fighting for his life. It was the most frightening time of our lives.  Adam was blue lighted to Dublin as we followed.   As we followed the ambulance I found myself planning his funeral in my head.  Adam was three days on life support.  He was going to be ok.  Everything was great for the first month, he was eating and sleeping well and had stopped banging his head. 

Adam started to get starring spells, falling for no reason and the tantrums would last for hours. He was losing weight again and not sleeping.  We realized the pain was coming from his head.  Adam would put his head in the freezer and bang his head off the wall for relief. This was scary. 

 He needed an MRI which but there was a waiting list of 24 months.   I went back to my GP in Mallow, Co. Cork. We were desperate.  We got an appointment for the Mercy Hospital in Cork weeks later, an ECG. Adam was diagnosed with Focal Epilepsy.   It took ages to get right epilepsy to control Adams seizures.    The MRI showed Compression of the Spin. This meant the spinal cord was being crushed against the base of his skull; part of his skull would need to be removed.    

Adam had sleep apnea, so further tests were done in Temple Street.   A probe was put into Adam's skull with wires.   These wires were stitched to his head.   Adam had fluid deep in the cavities of his brain.  Adam had his first shunt fitted.   Adam is almost 2 years seizure free now.  
We were looking forward to getting our lives back because over the last few years we just existed.

The Celtic Tiger hit Noel's business; he got a job with O’Hehirs Bakery.  His health had started to decline.  He gets abnormal swelling around his face, upper body and eyes.   He was diagnosed as an auto immune virus called panniculitis. 

The swelling settled in his legs causing ulcers from his knees to his toes.  This was diagnosed as pyoderma gangrenous. 

Noel was put on a series of high tech antibiotics, numerous courses of steroids, high tech injection and the list goes on..........

Then came the worst news, he had a bone marrow biopsy done and was diagnosed with Milo Dysplasia, This means that Noel's Bone Marrow was damaged; it was not making either red or white blood cells. Noel will be blood transfusion dependent for the rest of his life.

 Noel health got increasingly worse, constant antibiotics, left him with no immune system,   one chest infection after another.  Noel was spending more time in hospital than he was as home.   Noel was hospitalised with shingles, but later he was diagnosed with sweets syndrome.
This will be kept under control with steroids for the rest of his life.  

 Noel needed more and more blood transfusions, his blood pressure started dropping leaving Noel weak, unable to drive and eventually had to have a walking aid because he could fall at any time without warning.  Tests discovered a leak in a metallic valve Noel had fitted when he was 36.  This meant he wasn't getting the full benefit of his weekly blood transfusions and his bone marrow wasn’t getting any chance to recover.    This in turn could lead to Leukaemia and chemotherapy is out of the question because Noel had by now developed heart failure.

  After a long illness Noel was moved to the Mater Public, in Dublin to plug the leak in the value.   After several attempts they failed to plug the leak.   After several weeks in the Mater Public, Noel came home worst than he went in, he was much weaker, had lost a lot of weight, was oxygen dependent, his mobility was poor and needed a wheelchair and was falling without warning.

Three weeks later he was in hospital again, the infections were getting worst.   Noel’s health was reaching an all time low.  The cardiologist had no answers.   I knew we were losing Noel, the hardest thing I had to do was tell Luke, I brought him into see Noel and later for a walk and told him how sick his Dad was and that he might not make it.  I never want to have to do that to my 11 year old again, it was one of the darkest days of my life, and it broke my heart.  

38042080_1554305880462077_r.jpegHappier Days at Luke's Holy Communion

Luke being the child he is, growing up with sickness all his life, stood and looked at me.  He said he's not gone yet, let’s go to the shop and get you tissues so Dad won’t see you crying.  This gave me the strength to fight back.

 Noel was moved to the Mater Private. His recovery was slow at first.  He started to get stronger.  Noel was treated for endocarditis (an infection around the valve of the heart). Eight weeks later Noel was came home better than he was in years.  While he was in Dublin, the doctors spoke to Noel and I about replacing Noel’s valve.  We were made aware of the risks involved. 

Within two weeks Noel was back in hospital again, his was getting weaker day by day.   He was losing weight, and was by now skin and bone.  We both knew surgery was his last chance.  Noel was transferred to Dublin on the 21st of December, it was a very hard for the two of us, because Noel was not going to be home for Christmas, but we both knew there was a chance Noel might not see another Christmas. 

 We got through Christmas, and that's all I am able to say about that.  I travelled to Dublin on the 9.13am train ever morning.   I put Luke and Adam on their school buses in the morning, was with Noel for 12am and got home at 8.30 to give Adam his bath and medication.  We went through Luke's homework.   It was my way of keeping some normality in the home for the kids.

Noel got stronger and was scheduled for surgery but the evening before, the surgery was called off.  Noel's temperature was spiking to 39, his heart was racing and the infection markers were going up again.   Each infection was taking more and more out of him. 

Noel was scheduled for surgery again.  It was very hard on the two of us saying goodbye beforehand, the reality was all too clear that we might not see one another again.  From start to finish Noel was in theatre for 10 hours.  It was the longest day. 

 Noel had got through the surgery, but it had been a long hard day for all involved.   They found 3 ulcerated areas around the valve; this was where the infection was coming from. When removing the valve they found flesh and calcium build up in and around the valve, if some of this calcium broke away during surgery it was instant death.  Noel was a dead man walking for God knows how long.  Noel's valve was removed successfully and a new metal valve put in its place.

Noel is making a slow recovery, he is taking two steps forward and three back. He has a chest infection at the minute.   Noel is a fighter, but thanks to Prof. Mark Redmond for taking the chance, and to all at the Mater Private they are through miracle workers.  Thanks to my son Luke, who is wiser than his years and a true inspiration and hero, he kept me grounded and focused.   He reminded me constantly that I have to fight for Noel now as much as I had to fight for Adam in the past.
A  very good friend reminds me constantly, there are four in my pot, Noel, Val, Adam and Luke and it’s a my job to look after and protect that pot at any cost.

Thank you for reading my story.

Valerie Kennedy.
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€1,255 of €150,000 goal

Raised by 20 people in 28 days
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