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The Story of Imogen


Choosing just one favourite thing about your child is no easy feat for any parent. Brooke, mother to 5 year old Imogen, certainly found it a challenge. She told us:

“I love everything about her. She is perfect to me. Her smile, her giggle, everything.”

But when pressed to highlight Imogen’s superpowers, Brooke didn’t hesitate to talk about how much she admires Imogen’s drive.

“She just gives 1000 percent to everything and doesn’t ever give up”

And because of that, Imogen herself is Brooke’s source of strength.

“She’s just so determined. She just has so much drive in all her therapy sessions and a willingness everyday to give anything a shot. She’s really the one that drives me – just in seeing how far she’s come and her constant improvement.”

When Imogen was 4 months old, Brooke realised she was not developing like other babies her age.

“I had never held a baby before my own but I knew something was wrong. Imogen was the oldest baby at our mother’s group and the other children were all interacting and making eye contact, but Imogen never did.”

So she began the agonising process of months of testing and referrals via her community health nurse. At 11 months old, Imogen was finally diagnosed with a rare chromosome disorder, 5Q14.3 micro deletion syndrome.

She is one of 2 children in WA, one of 8 in Australia and 1 of 60 in the world who have this disorder. Imogen’s doctors don’t know much about it, and PMH wanted her to be part of a medical journal.

Depending on the severity of the syndrome, the rare disorder affects each child differently. For Imogen it means lifelong care due to epilepsy, severe hypotonia, visual inattention and wearing a nasal gastric tube to keep her nutritionally sustained. Having such a rare diagnosis feels very isolating at times.

“The other family in Perth doesn’t want to be contacted but I am in contact with families on the east coast who share the diagnosis.”

Despite the rare and uncompromising diagnosis, Imogen is a happy and energetic 5 year old who loves to get dressed up and watch her favourite TV shows like Elmo, Thomas the Tank Engine and The Wiggles.

“Her happy place could really be anywhere as she loves trying to do things herself and she’s just fiercely independent. She loves her own company, and doesn’t like to be always held.”

Imogen flaps her arms and kicks out her legs with the biggest smile when she is happy.

“I just love her smile and her giggles. She laughs so much she cries, and it makes my heart melt. They are so so girly, little high pitched squeals and it’s totally infectious!”

“With her big blue eyes and her long eyelashes everyone just falls in love with her instantly.” Her eye lashes are in super power territory – she had to shop at 3 different optometrists to find a pair of glasses that did not hit them whenever she blinked!

“Communication is my biggest dream for Imogen. To be able to tell us what she’s thinking. I can see her frustration when we get it wrong.”

“Another one is Disneyland. It’s been on the bucket list for a few years. She loves Minnie Mouse. Just for her to be a kid and eat all the fairy floss in the world, really any 5 year old’s dream.”

Which is fitting as Brooke’s favourite quote about Imogen’s journey is “Nothing is impossible and nothing can stop us.”

Yet single mum Brooke says one of her biggest struggles is being too hard on herself. She worries “that 110% isn’t my best and I feel constantly let down by my own efforts.”

“I also think the community need to be educated and there needs to be more awareness of people with disabilities in general”

When things get hairy, Brooke happily leans on her parent friends from Imogen’s school.

“They are the best emotional support. They are amazing. We all have something in common – our children.”
 
 

Help us celebrate more amazing kids like Imogen by buying a copy of her artwork here.

 

 

 

Author
|Caroline Dempster | 

Artwork by
| Janet Pan | Little Sketchy
www.facebook.com/littlesketchyaus/ | @littlesketchyaus |

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