Cork charity 'brought our little girl back' after she had three strokes, says mother

The Cork City Hospitals Children’s Club rewards deserving children who have suffered through illness or trauma

(Back row, left to right) Edel Tobin, her son Conn and husband John, (front row from left) Mia and Alex Tobin at Cork Airport before leaving for Euro Disney in Paris with Cork City Hospitals Children's Club on Sunday. Picture: Larry Cummins

A mother fought back tears as she thanked the charity who gave them their “little girl back” just months after enduring three childhood strokes.

Edel Tobin and her family, from Kilcrohane in West Cork, are among 80 people on the trip of a lifetime to Disneyland courtesy of the Cork City Hospitals Children’s Club. 

(Left to right) Conn, Alex and Mia Tobin at Cork Airport on Sunday. Mia has Russell-Silver syndrome and was also hit by three inexplicable strokes shortly after her eighth birthday. Picture: Larry Cummins

Now in its 30th year, the organisation rewards deserving children who have suffered through illness or trauma. The holiday will be the first of its kind since 2019 when the pandemic brought the annual trips to a temporary halt.

Edel was travelling with her husband John, daughter Mia (8) and sons, Alex (6) and Conn (3).

She explained that Mia has been extremely unlucky over the years. Mia has Russell-Silver syndrome UPD7 — a very rare condition impacting her growth. She was also hit by three inexplicable strokes shortly after her eighth birthday last September. The medical events were unrelated to Mia’s condition.

Mia’s first two strokes went undetected despite a trip to the emergency department. However, a GP referred her for immediate treatment with a neurologist after recognising the signs. Mia experienced her third stroke at Cork University Hospital.

“Mia was in so much pain she told us that she thought her head was going to explode,” Edel recalled. 

“We knew it wasn’t normal so we put her straight in the car and brought her to A&E. They gave her a syringe of apple juice which she tolerated so they believed it was viral. 

We realise now that she was after having a stroke that night. It was the last thing we had ever expected since Mia is so young. 

"A couple of days went by and she was just sleeping all the time. Then one night she said she couldn’t feel her hand on her leg.” 

Mia’s jarring vocabulary also prompted serious concern from Edel. It was at this point that she sought a second opinion from their local GP. What followed was a testing 16 days in Cork University Hospital.

“The MRI was petrifying enough for Mia because she knew what was happening. After they spoke to me in the hospital, she saw me crying and said: 'They’re after finding something in my brain aren’t they?'"

"Mia went through hell that week but she never objected to any of the treatments. She did it all and was absolutely fantastic. Everyone in the hospital went above and beyond for her.” 

Edel said Mia was like a different child after the stroke. She maintains it was the Cork City Hospitals Children’s Club that gave them their little girl back.

Parents Edel and John Tobin with their children Alex, Mia and Conn and Spiderman at Cork Airport on Sunday. Picture: Larry Cummins

“Mia was a different child when she came home from the hospital. She was just a mixture of being so scared and traumatised after what happened. 

"It had reached a point that she couldn’t wear leggings or any kind of tight clothing because of her anger and frustration. It was like she wanted to just break free from it all. We actually went out and bought a bed to put in our bedroom so she wouldn’t have to be alone.” 

The turning point came when Edel and John told her about the Disneyland, Paris trip.

“John and I knew about Disneyland in November but had initially planned to wait until Christmas to tell Mia. One night things got really bad so we made the decision to tell her early. When the new year hit we got her a calendar. Every day she would cross a day off. With every day she crossed off Mia started to come back. 

This trip is so much more than a free holiday to us. It has really and truly brought her back to us.

She said they will be eternally grateful to the CCHCC.

“Mia hadn’t even cared about Christmas last year. It was only when she started doing the “xs” on the calendar that we began to see any kind of change. I can’t even describe what that felt like.” 

Edel said that Mia had dreamed of going to Disneyland before she fell ill.

“Even before she had the strokes, she was asking me when I was taking her there. We often went camping to Killarney so I joked that a tent was as much as we’d be seeing for the moment. 

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"The boys don’t know much about Disneyland but it is something that’s really special to Mia. She knows how huge this is.” 

Mia is defying the odds after the harrowing ordeal.

“The trip to Disney has got Mia back into her own bedroom which she wasn’t able to do before. It’s only in the last two weeks that she’s moved upstairs. The excitement of Disneyland has given her something to just completely focus on. 

"It has been a big distraction. She is so happy in herself now. Mia is now the little girl we had before this happened.”