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Mum's wish 'My first hope is that children with disabilities like my Willow are seen as just children, not a disability'

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Four-year-old Willow was born with profound special needs

Four-year-old Willow was born with profound special needs

Four-year-old Willow was born with profound special needs

Tracy Carroll has a simple new year’s wish for her daughter Willow - that she will be seen for who she is and not the disability she has. In January she will meet government bosses to discuss how that can be achieved and how Ireland can become more inclusive as a society.

The four-year-old was born with profound special needs but has beaten medical odds to become a bubbly little girl.

Tracy, who blogs about her experiences, has become such an advocate for Willow and other children that she has been invited by representatives of the Minister of State for Disability, Anne Rabbitte to discuss them.

“My first hope is that children like Willow are seen as just children, not a disability. My desire for her life is that she has a life as a child. I want her to grow in an inclusive society.

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"I’m having a meeting with Anne Rabbitte and I’m presenting a child-led progressive plan, one that looks at individual needs instead of putting everyone under the same umbrella. Stop segregating children like Willow from society, she fought so hard to be here.”

Doctors told parents Tracy and John, from Kells in Co Meath, that their daughter had no hope of survival, such was the profound nature of the multiple issues she was born with. She has level five cerebral palsy which effects all of her limbs, she has epilepsy and is fed through a peg.

"But earlier this month she turned four, and continues to be a joy in the lives of parents Tracy and John and her big brother Noah. Just last week and out of the blue, she said “hiya” for the first time, and continues to surprise them every day.

“The people that have come to our lives because of Willow are just fantastic and puts it all into perspective,” said Tracy. Among them are staff at Irish children’s charity Jack & Jill, who have provided invaluable supports including nursing care hours.

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“We wouldn’t have survived our first year without them. We were terrified when we brought her home. I didn’t know whether I was coming or going. That’s the difference with Jack & Jill, they’re there for your family and they become part of your family.

"They’re there for you no matter what. If Jack and Jill weren’t in our lives our lives would be very different. If we needed them, you’d make a phone call and they’d help you.”

Tracy started a Facebook blog called Willow’s Way that has many hundreds of followers, where she celebrates the life of her girl.

“She’s already left a legacy and there aren’t many who can say that. Now is what’s important is not what tomorrow brings. We like to think about now and keeping her healthy now so we can have our hopes for the future.”

In the new year Tracy will continue to advocate for Willow and other children with special needs across several areas, including access to services, health and education.

“It’s about being inclusive around society.

She has her life, she has her interests, she has her personality. Every child is different so let’s look at children on that basis. That is the hope, to just really see society evolve for everybody and not to pigeon hole people.

“The key in this is childhood and the key is to start from children up. Children are our educators. I really think education is the key. We need to see schools integrated and with additional services for children with special needs.

"Make it a community where the services are all rolled out with the education system. Why not have it for children with special needs?Instantly they’re treated differently.

“We were given no hope for her at all and she continues to surprise us. She’s saying “hiya” now. We get to enjoy tiny little things so much more. There’s a freedom in difference because we don’t have to conform to any expectations.”

For more information about Jack & Jill, the work they do and how you can support it, log on to www.jackandjill.ie

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