Young family homeless due to medical needs

A young family with severe medical needs has been left homeless for over a year due to their need for two bathrooms to avoid cross-contamination. Rob McNamara meets them at their emergency accommodation in Cobh
Young family homeless due to medical needs
Aaron Kenneally and Kellie Lewis from Youghal with their son Conor, at their emergency accommodation in Cobh. Picture: David Keane.

Kellie Lewis and Aaron Kenneally are a young couple who should be enjoying life with their pride and joy, 16-month-old son Conor.

While Conor is a happy little boy who is clearly adored by his parents, life for the family has been a recurring nightmare over the last year.

They have been registered as homeless for the last 13 months. Currently, they reside in a self-catering apartment with three rooms and a bathroom attached to a hotel in Cobh. They have lived there since June.

While grateful to not be out on the street, the apartment is far from a permanent solution for a couple with a young child.

Conor's playpen takes up space in one corner of the room, while his high chair resides in another. With a couch, kitchen, and table in the main room, living space is at a high premium.

The second room is home to Conor's boxes and boxes of medical equipment and cannot be used for anything else.

This emergency accommodation is on a week-to-week basis and the couple could be asked to move out at short notice at any time.

With the housing crisis at its peak and hundreds of people without a permanent home, this is sadly an all too familiar story.

However, a series of unfortunate and extremely serious health issues for Conor and Kellie has seen this family remain mired in homelessness as their needs are so complex.

They are in constant fear of ending up on the streets and there is no end in sight.

Kellie and Conor both need constant care and with Aaron acting as full-time carer to his partner and son, he is unable to work.

As a result, private rented accommodation is only affordable with the Housing Assistance Payment (HAP) and the couple has experienced several rejections from landlords who just don't want to know about tenants on HAP.

For any young couple, the birth of their first child should be a joyous occasion. For Aaron and Kellie, it was a time of constant worry and stress.

The series of medical issues that have transpired to lead the family down this path is simply staggering.

From birth in June 2016, Conor has been prone to aspirating when imbibing fluids. Liquid is drawn into his respiratory tract when drinking and this could cause him to effectively drown.

This means he must receive fluids from a tube in his tummy. The condition has almost killed him on two occasions.

Paramedics have been called into save him when he has been unable to breath.

He requires a sterile environment so the open wound that accommodates his tube is not infected and because Kellie has previously suffered a burst bowel and wears an ileostomy bag, the family require a house with two bathrooms to avoid cross-contamination.

Kellie and Conor cannot share a bathing area or toilet under any circumstances.

Aaron says they live in constant fear of Conor getting sick – he currently bathes in a baby bath that he is far too big for.

“When Conor was born we were up and down to hospital. We were there for two weeks after he was born. When he was five weeks old, he stopped breathing in his moses basket. He went blue. We thought he was gone. The paramedics came quick enough and saved him. He went back to Cork University Hospital (CUH) and was there for about a week. After that, the same thing happened again and we took him to the Mercy. They said it was just reflux – as the CUH had said.

“Then we went to Crumlin ourselves because we weren't happy. He was taken to the resuscitation unit straight away. They told us we were lucky that we had come when we did or we may not have Conor here anymore, he'd be gone.

“The medical people at Crumlin said he was gradually drowning because of the fluid in his lungs. They have never found a diagnosis for it,” he adds.

Kellie adds: “Conor had already almost died twice on us. The CUH didn't pick up that he had so much fluid in his lungs. The fluid had been there since he was born to five weeks old. It was building up all the time and caused him to get pneumonia twice. He was very, very sick.” 

Conor's medical supplies must be sterile and cannot be reused. As a result, new ones must always be at hand and boxes of syringes and tubes are stacked at almost ceiling height in one of the rooms at the apartment.

If they have to move, all the supplies must go with them – they cannot leave them behind, as, without them, Conor's health would be seriously compromised.

Coupled to Conor's illness, Kellie has also had serious health issues. She has idiopathic intracranial hypertension – pressure around the brain and is a stroke risk.

“I went blind during my pregnancy with Conor and had major brain surgery at three months,” says Kellie.

“My bowel almost burst six months before I got pregnant so I'm left with an ileostomy bag.

“I was eight weeks pregnant and my shoulders became sore and stiff. I started vomiting and they told me it was down to the pregnancy. They tested me for meningitis but the results came back negative. My eyesight then began to deteriorate and I couldn't look at light. After several visits to the doctor, I was put on steroids and they said it would pass.

“I ended up back in hospital and they kept me in to just to make sure there was nothing going on. They did a brain scan but I was about to pack my bags to go home and they told me I needed to go to the minor stroke unit. They told me I was about to have a stroke. They did a lumbar puncture and the pressure was over 60. They said they'd never seen such a high reading.

Aaron Kenneally and Kellie Lewis from Youghal with their son Conor, at their accomodation in Cobh.Picture: David Keane.EEjob Echo News09.11.2017
Aaron Kenneally and Kellie Lewis from Youghal with their son Conor, at their accomodation in Cobh.Picture: David Keane.EEjob Echo News09.11.2017

“I can't work and I can't drive. I can never mind children or work in a physical job. I also have a huge hernia in my stomach. Next year, they are bringing me back to have more brain and bowel surgery. It's a nightmare. Everything that could go wrong, has gone wrong and it's still ongoing,” she adds.

Before the couple and their son registered as homeless in October 2016, they had been staying with Kellie's mother in Youghal.

“It was overcrowded at my mother's house,” says Kellie.

“We couldn't fit all Conor's stuff into the house. He has a lot of equipment and medication for his needs. There's no possible way we could bring all that to my mam's house.

“Conor needs a sterile environment otherwise doctors say any contamination could make him very ill. So, we presented ourselves as homeless,” she adds.

From Kellie's mother's home, they had nowhere to go and that's when their struggle to find a permanent home began.

They have gone down the Choice Based Letting (CBL) - for social housing - and Housing Assistance Payment (HAP) - for private rented accommodation - routes but to no avail.

Cork County Council doesn't have a suitable property for them and landlords are reluctant to take on a couple reliant on HAP. The situation has left them in a state of limbo.

“We were put into the Silversprings for about three weeks. Then we had to move to Carrigaline in a B&B,” says Kellie.

 “We got offered a house just before Christmas last year. It had two bedrooms and one bathroom. However, my consultants say it's not safe for me to share a bathing area or a bathroom with Conor because of cross-contamination.

“He currently has to bathe in a little baby's bath which he is too big for. He can't go into the bathroom we have here because I have to empty my ileostomy bag and I have to shower without any bag on. He has an open wound in his stomach, where his feeding tube is attached – and he could pick up an infection really easily. Cork County Council know that.

“They told us they understood that and they told us we would get a two-bedroom, two-bathroom house. However, they offered us a house in Youghal which had only one bathroom – it was unsuitable.

“We had to refuse it. They said that was OK and agreed it was a valid refusal. Two weeks ago, we got another offer for a house, that again had just one bathing area.

“A councillor has been helping us and they were told we would get a two-bed, two-bathing area house. Nothing happened.

“I have been ringing the council repeatedly and have asked them to build on a bathing area but they have told us that may not be possible.

“It's very upsetting for us.

“We have been bidding on CBL properties. Anything that suits our needs, we bid on, so we have bid on some three-bed houses as no suitable two-bed properties have come up. The person that we are dealing with at the council said no two-bed properties with two bathing areas are going to come up and we've been told to stop bidding on three-bedroom properties.

“We have been told that we could be homeless for a number of years as the type of property we need just isn't available.

“We are trying to get a private rented property through HAP but we haven't found a landlord who is willing to accept HAP. When we say we are on the HAP scheme, we never hear back from landlords,” Kellie adds.

Because they only have one child, Kellie and Aaron cannot extend their search for a home to a three-bedroomed property under the CBL scheme with Cork County Council.

“We won't get a three-bed house because we only have one child. It wouldn't be fair to bring another child into this situation,” says Kellie.

“What do they want me to do? Go off and have another baby. I nearly went blind the first time. It could be worse this time, I could die. I really thought that with how sick Conor and I are we would have been housed by now.

“If we end up on the streets, where am I going to plug in my son's medical equipment? From the stress of moving to all different places, I ended up in hospital recently with seizures. That's down to the stress of what we're going through with homelessness and to add to that I have my own illnesses.

“Our accommodation is weekly here so we have to ask each week if it's OK if we can stay for another week. If we had to leave here, we'd have to bring all Conor's medical equipment with us.

“We can't even wash our clothes, we have no washing machine. We have to go to our mother's or the dry cleaners and that can be €25 to €30 a go. I'm very grateful we've been here as long as we have been because I don't know what we're going to have to do if we have to move out with all of Conor's stuff. We are living week to week.

“We haven't once been difficult with the council. Neither of us drive so we have to think about bus routes with Conor and my hospital appointments. We have to find our own way to places.

“I just don't know what we are going to do anymore. I ring the council every single day. I leave them messages, I was crying on the phone to them a few times. This is heartbreaking.

“We are grateful to have a roof over our head and that we're not living out of just one room but it's not a permanent or adequate solution. We could be asked to leave at any time.

“What are we going to do and where are we going to go with all our stuff?

“Nobody could understand how stressed I am every day. It's getting so much harder. We could be on the streets next week,” Kellie adds.

The most recent offer of a home from Cork County Council came at the end of October. The property was again a two-bed house with one bathing area. Kellie and Aaron told the authority that they could not accept due to the dangers of cross-contamination in a single bathing area.

In a letter to Kellie and Aaron dated November 6 Cork County Council state that their refusal of the latest property with two bedrooms and one bathroom is “not acceptable” and noted it could result in the family losing their rent allowance.

The letter adds: “Cork County Council does not have a stock of two bedroomed accommodation with two bathrooms available”.

“Cork County Council is obliged to notify the Department of Social Protection of all refusals of Local Authority dwellings. The refusal of this offer may result in the termination of Rent Allowance under the Social Welfare (Consolidated Supplementary Welfare Allowance) Regulations, 1995.” 

If the couple does not accept a home they have been told is unsuitable by medical people for Kellie and Conor's severe needs, they could find themselves without a roof over their heads over the Christmas period and beyond.

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