HELP KYRA SPREAD HER WINGS
Donation protected
HELP KYRA SPREAD HER WINGS
Let me introduce you to our beautiful ‘Angel’ Kyra. Kyra is a cheeky, friendly & generally happy 8 year old. She loves music, water, bubbles & most of all people! Kyra has shown amazing strength & growth in her short 8 years but with growth comes new struggles.
Carly & her husband, Kurt, are high school sweethearts, first dating when they both were only 15 years of age. Their first child, Kasey James was born in 2008. A healthy baby boy! After marrying in 2009, Carly was pregnant again by mid 2010. An uncomplicated pregnancy & normal birth, with Kyra entering the world in April 2011.
Problems first arose when Kyra was only 6 weeks old. She was choking when feeding & gasping for air when breathing. Diagnosed with soft tracheal cartilage, causing her infant airways to collapse on expiration, this led to her being on permanent oxygen until she was almost 2.
At 7 weeks old Kyra was diagnosed as a silent aspirater. She was unable to co-ordinate swallowing, thus any liquid would run into her lungs & she would choke frequently. To this day, Kyra is still unable to drink fluids that are not thickened.
At one stage in her first 12 months of life, Kyra was under the care of 14 different specialists all working together & carrying out various tests to see what was underlying.
Kyra spent the first 2 years in & out of hospital with illnesses due to her breathing & feeding difficulties. It would only take a common cold for her to be admitted. At one point when she contracted pneumonia, it was touch & go whether she would respond to medication.
Kyra never met any of the milestones a normal healthy baby reaches in that first very important year of a child’s life.
Just before her first birthday, a confirmed diagnosis of Angelman’s syndrome gave us some much needed answers....
Angelman’s syndrome is a rare genetic disorder, affecting approx 1 in 20,000. Characteristics of the syndrome include seizures, profound developmental & physical delays, severe intellectual delays, mental impairment, hyperactive behaviour, involuntary movements, sleep disorders & speech problems (90% are completely non-verbal)
Due to all the above mentioned, Kyra is unable to ever be left unattended. This will always be the case, even as she becomes older & into adulthood.
Kyra was over 2 years old before she was able to sit unassisted. She has managed to manoeuvre herself around for the last few years by “shuffling’ herself to wherever she needs to get to. Walking is something Kyra will always struggle with, however with ongoing therapies & assistance we do hope she will be able to walk somewhat independently. Currently Kyra is non mobile & relies on a wheelchair for mobility & a specialised walker to strengthen her legs in the hope that one day she will walk. Kyra has recently had a new wheelchair specially made to fit her needs, and thus a new wheelchair access vehicle was necessary to accomodate this - thankfully Variety have assisted with purchasing this much needed item.
Unfortunately the family home is still not equipped to accomodate with the ongoing requirements needed for a young family with a severely disabled child.
Appropriate ramping is needed to decrease the daily physical strain of entering & exiting the home.
Manoeuvring the wheelchair inside is an almost impossible task & Kyra’s equipment has slowly taken over the comfy family home.
Having dinner guests is near impossible as her specifically designed feeding chair takes up the majority of the kitchen/dining area. Her sneaky hands often get hold of everyone else’s meals in this confined space.
Kyras love of water is entertaining but physically exhausting! The original 1960s bathroom whilst beautiful with its slippery terrazzo flooring and original baby blue bath, is simply not suitable for a child with Kyras needs. A suitable wet area would make Slip & slide time much easier far all. Bathing & showering are the biggest struggle of the day...
We have decided its time for this family to extend their exisiting cosy house into a home suitable for a girl like Kyra to grow. This will enable Kyra to “spread her wings” & give her the room to fly & soar like she deserves!!!
We all so often tend to take these simple things for granted. Unfortunately for a family like Kyras the simple things can often be the hardest. Between numerous therapies, hospital appointments, & every day work, there does not leave much time for these guys to spend time together let alone renovate their home. A house that is suited to their requirements will vastly improve their every day lives.
Amazingly Carly & Kurt never ask for help. They both work hard and remain committed to doing the best they can for both their children. Their strength & resilience is admirable! Having a home that can be safe, comfortable & big enough to allow Kyra & the rest of the family to live an easier life will be an amazing life changing gift.
Let me introduce you to our beautiful ‘Angel’ Kyra. Kyra is a cheeky, friendly & generally happy 8 year old. She loves music, water, bubbles & most of all people! Kyra has shown amazing strength & growth in her short 8 years but with growth comes new struggles.
Carly & her husband, Kurt, are high school sweethearts, first dating when they both were only 15 years of age. Their first child, Kasey James was born in 2008. A healthy baby boy! After marrying in 2009, Carly was pregnant again by mid 2010. An uncomplicated pregnancy & normal birth, with Kyra entering the world in April 2011.
Problems first arose when Kyra was only 6 weeks old. She was choking when feeding & gasping for air when breathing. Diagnosed with soft tracheal cartilage, causing her infant airways to collapse on expiration, this led to her being on permanent oxygen until she was almost 2.
At 7 weeks old Kyra was diagnosed as a silent aspirater. She was unable to co-ordinate swallowing, thus any liquid would run into her lungs & she would choke frequently. To this day, Kyra is still unable to drink fluids that are not thickened.
At one stage in her first 12 months of life, Kyra was under the care of 14 different specialists all working together & carrying out various tests to see what was underlying.
Kyra spent the first 2 years in & out of hospital with illnesses due to her breathing & feeding difficulties. It would only take a common cold for her to be admitted. At one point when she contracted pneumonia, it was touch & go whether she would respond to medication.
Kyra never met any of the milestones a normal healthy baby reaches in that first very important year of a child’s life.
Just before her first birthday, a confirmed diagnosis of Angelman’s syndrome gave us some much needed answers....
Angelman’s syndrome is a rare genetic disorder, affecting approx 1 in 20,000. Characteristics of the syndrome include seizures, profound developmental & physical delays, severe intellectual delays, mental impairment, hyperactive behaviour, involuntary movements, sleep disorders & speech problems (90% are completely non-verbal)
Due to all the above mentioned, Kyra is unable to ever be left unattended. This will always be the case, even as she becomes older & into adulthood.
Kyra was over 2 years old before she was able to sit unassisted. She has managed to manoeuvre herself around for the last few years by “shuffling’ herself to wherever she needs to get to. Walking is something Kyra will always struggle with, however with ongoing therapies & assistance we do hope she will be able to walk somewhat independently. Currently Kyra is non mobile & relies on a wheelchair for mobility & a specialised walker to strengthen her legs in the hope that one day she will walk. Kyra has recently had a new wheelchair specially made to fit her needs, and thus a new wheelchair access vehicle was necessary to accomodate this - thankfully Variety have assisted with purchasing this much needed item.
Unfortunately the family home is still not equipped to accomodate with the ongoing requirements needed for a young family with a severely disabled child.
Appropriate ramping is needed to decrease the daily physical strain of entering & exiting the home.
Manoeuvring the wheelchair inside is an almost impossible task & Kyra’s equipment has slowly taken over the comfy family home.
Having dinner guests is near impossible as her specifically designed feeding chair takes up the majority of the kitchen/dining area. Her sneaky hands often get hold of everyone else’s meals in this confined space.
Kyras love of water is entertaining but physically exhausting! The original 1960s bathroom whilst beautiful with its slippery terrazzo flooring and original baby blue bath, is simply not suitable for a child with Kyras needs. A suitable wet area would make Slip & slide time much easier far all. Bathing & showering are the biggest struggle of the day...
We have decided its time for this family to extend their exisiting cosy house into a home suitable for a girl like Kyra to grow. This will enable Kyra to “spread her wings” & give her the room to fly & soar like she deserves!!!
We all so often tend to take these simple things for granted. Unfortunately for a family like Kyras the simple things can often be the hardest. Between numerous therapies, hospital appointments, & every day work, there does not leave much time for these guys to spend time together let alone renovate their home. A house that is suited to their requirements will vastly improve their every day lives.
Amazingly Carly & Kurt never ask for help. They both work hard and remain committed to doing the best they can for both their children. Their strength & resilience is admirable! Having a home that can be safe, comfortable & big enough to allow Kyra & the rest of the family to live an easier life will be an amazing life changing gift.
Fundraising team: KYRAS ANGELS (2)
Simone Miller
Organizer
West Richmond, SA
Shannon Minagall
Team member