Emma joins battle for those who can’t fight

Emma joins battle for those who can’t fight

22 June 2016

EMMA Magee has been fighting for the rights of her daughter since she was born with a rare genetic condition almost four years ago. 

Securing specialist services has been a priority for the 32 year-old Downpatrick mum since Sophia was diagnosed with Cornelia de Lange syndrome, which affects just one in 10,000 babies, when she was just 48 hours-old.

Vowing to fight for her little girl “until her last breath”, Emma is now spearheading a campaign to maintain full-time special needs nursery provision, which is under threat of cuts.

Aghast at news that hours at Knockevin Special School’s new nursery campus in Dundrum will be halved in September, Emma said she is now ploughing all her time and energy into ensuring the decision is reversed for the benefit of her child and others like her.

Knockevin Special School is one of six nurseries that will be immediately affected by plans to almost halve daily provision from 4.5 hours to 2.5 hours.

Although the Education Authority last week agreed to re-examine these plans following a parental backlash, it has insisted that provision in several nurseries, including Knockevin, will still be temporarily cut in September to cater for an increase in demand.

Emma, who is part of a lobby group, Parents for Equal Education Coalition (PEEC), which was established by concerned parents to fight the cuts, attended a meeting at Stormont last week to air her concerns about the plans.

Although she is relieved the Education Authority backtracked on some of its plans following their meeting, she said she found an apology offered over the handling of the cuts “insincere and coerced.”

As a result, Emma is still determined to fight for long-term, full-time provision for Sophia and other children with special needs.

Without such provision, she warns Sophia may regress and lose some of the progress she has recently made.

“Sophia has complex special needs and is quite behind developmentally. It will take her 20 minutes to settle into nursery after arriving and it takes a full hour to feed her during which time she has to remain in an upright position,” she said.

“This means she can’t do free play or any of her therapies during this time. That does not leave much time out of a two-and-a-half hour slot.

“Sophia is only starting to socially interact and is beginning to watch other children and learn from them. It concerns me that she will not be with her peers over lunchtime to have the opportunity to see them eating, which will be important for her development as she is still being tube-fed.

“How much will she learn in two-and-a-half hours? Do we neglect her feeding so she can learn or do we neglect her walking so she learns to feed? Something will have to give.

“To me this is a resources issue, it speaks for itself. That is very stressful.”

Emma says she finds it incredible that parents like her are forced “to push and fight” for their children.

She said her fight began when Sophia received her diagnosis shortly after being whisked away from her at birth when she weighed just 4lbs 9oz.

Although she mourned the child she had expected as a first time mum, Emma said her shock and fear of the unknown did not take away from the instant love she felt for Sophia.

“We loved her from the second we set eyes on her. It was just a fear of what it meant for her future,” she recalls. “We cried that we did not have a baby to take home and we grieved as we did not have the baby we expected.

“But she taught us so much. Looking back I would never change it.”

Because of her love for Sophia, who she says “makes her heart swell”, Emma said she and her husband and family will keep fighting for their daughter and will battle to restore full-time provision at Knockevin in September despite the fact that time is running out. “We have been pushing and fighting for her from the moment she was born. We have to keep fighting for things for her and we will not stop,” she said.

“I will fight until my last breath for anything my children need. I have no qualms about doing that because they are my priority.

“But the point is I should not have to be fighting like this. I should be spending this time with my children.

“Instead of fighting with Stormont officials I should be sitting down with my child helping her to learn. They are taking away time with me from her.

“This has an impact on the whole family. I feel like it is taking over because I am constantly taking phone calls, reading emails or sending messages and I am losing sleep because I try to do as much as possible when the kids are in bed.

“I am still hopeful for September. I am certainly not saying I am giving up, but it is looking more difficult as we run out of time.

““As tired as I might be, it is worth it because Sophia is the happiest child I have ever met, she smiles all the time, she is not hard to look after. She lights up the room with her smile and her giggle.”