North Belfast mother whose son (4) has rare medical condition pleads for new home where he can `thrive'
A WOMAN whose son is the only child in Northern Ireland with a rare medical condition, which has left him in heart failure, has pleaded for help in finding a permanent new home where he will can thrive.
Mother-of-four Christina McCourt (32), who lives in an apartment block in the Woodland Avenue area of north Belfast, said her son Jonathan (4) still sleeps in a cot as there is no room for a bed for him in their current home.
He cannot walk more than three steps without becoming breathless, which can see him in need of supplementary oxygen.
Ms McCourt said pleas to housing association NB Housing for a transfer had so far "fallen on deaf ears".
She fears her living conditions could delay her son undergoing upcoming tracheostomy surgery, as the care package he needs in the aftermath cannot be implemented in their apartment as medical personnel and carers need a room to stay.
Jonathan is the only child in Northern Ireland who suffers from Geleophysic Dysplasia 3, which affects many parts of the body and is characterised by abnormalities involving the bones, joints, heart, and skin. He also suffers from significantly limited mobility.
Jonathan's condition, which led to his airways not fully developing, is also linked to heart problems. He sleeps with a mask over his nose at night and the aerosol generated ventilation helps keep his airways clear. This means, his home must store numerous pieces of essential medical equipment, including oxygen cylinders.
While Jonathan's 12-year-old sister and 11-year-old brother share one bedroom, he sleeps in a cot in the other, as there is no room for a bed. He shares the room with his mother, who sleeps in a single bed and his eight-month-old brother, who sleeps in a travel cot.
Speaking to The Irish News, Ms McCourt said the family's current home gives Jonathan "no room to thrive, there is no room for independence".
"There is no respite. We can't bring in a carer as we don't have the room. The bedroom is taken up with so much medical equipment," she said.
She said her family's apartment is not "fit for our needs".
"It is a never ending battle," she said.
"You are screaming so loud but so silent because you can't be heard. I always feel like I am letting him down. I can't get my voice heard and as a mother, that is devastating.
"He can't thrive in life. He can't get any independence. He is constantly held back."
A spokeswoman for NB Housing said it was "very much aware" of Ms McCourt "complex situation" and its staff had been supporting her "in terms of offering her housing advice and assisting her to make an application to the NIHE".
She added that Ms McCourt was assessed for a housing transfer but as they have "no suitable accommodation, we advised her to make an application to the NIHE to be considered as a full duty applicant, to increase her possibility of being rehoused in more suitable accommodation by any social landlord".
A spokesman for the Housing Executive last night said it had "offered the family temporary accommodation".
He added: "We will continue to work to provide them with a permanent housing solution."