Walk to support the Kiefer family

March 1, 2017

Parents Caroline and Chris Kiefer have to take it one day at a time as they often have sleepless nights due to their 9 year old daughter Alannah’s challenging condition.

Despite her enthusiasm and zest for life, Alannah suffers from an undiagnosed genetic syndrome and Developmental Epileptic Encephalopathy which is a severe, refractory epilepsy.

A difficult start to life

Alannah started to show signs that something was wrong in the early days of her life with sunset pupils, low tone, poor feeding and excessive sleepiness which lead to several hospital admissions in her first year.

“We were told the future looked very uncertain and that most likely, she would not walk” says her mother Caroline.

During this difficult time, Alannah was also noted to be falling behind with her milestones and was diagnosed with Global Developmental Delay.

Vibrant energy and a love of horses

Now 9 years old, Alannah is walking, running, jumping and dancing. She has amazing energy however physical exertion seems to be a huge trigger for nocturnal seizure activity, so each day is carefully monitored as to not overdo it.

Alannah also attends Riding for the Disabled each week where therapy is incorporated with horse riding.

“Because of her seizures she gets extremely tired or over stimulated easily, but horse riding keeps her more calm and focussed” says Caroline, “it’s also helped a lot with her core strength and communication skills, she loves saying giddy up!”

Support from Very Special Kids

The Kiefer’s access respite through Very Special Kids Hospice several times a year.

“This is Alannah’s ‘special holiday’ time; she just loves all the attention from the nurses and volunteers” says Caroline.

“This time allows us some extended rest periods and an opportunity to do some things with our son that are otherwise difficult. We are able to relax, knowing that she was in good hands and having lots of fun!”

Very Special Kids also help the Kiefer’s by providing emotional support and guidance through a trained Family Support Practitioner.

“The support has been amazing – it allows me time to clear my head, debrief and keep things in perspective” says Caroline, “ever since our introduction, Very Special Kids has continued to be an invaluable resource for our family.”

How you can help

Very Special Kids is proud to announce that we are one of three charity partners for a new 27km walking event called Walk for Phil.

Taking place on March 11 at Caulfield Racecourse, event participants will walk the mostly flat course to Moonee Valley Racecourse before finishing at Flemington Racecourse in time for ‘Super Saturday’.

The walk is in memory of the late Phil Sly, who was passionate about horse racing and helping provide life-changing differences for others. Very Special Kids was a charity he held close to his heart.

By taking part in the Walk for Phil you will be helping raise important funds to help children like Alannah and her family.