Myra Sykora

The children’s Mother, Amy, passed away in a car accident on the 4th of April 2019.

 

Myra is currently under support services in Western Australia and is registered with the WA Department of Communities, Disability Services due to a diagnosis of Miller Deiker Syndrome which is a genetic condition characterised by a specific brain malformation (Lissencephally).

 

As a result Myra lives with a range of disorders including (but not limited to) epilepsy, cerebral palsy, global developmental delay, epiglottical dysfunction, cortical vision impairment, muscular atrophy and thermal regularity disorder. Myra’s intellectual capacity is around that of a 3 month old child. Myra requires full support with all aspects of personal care, daily living and community access.

 

Karel is in the RAAF and will be moving to Brisbane before the 8th of July 2019 from Perth.

 

The children will experience their first ever move to another capital city and the change in family circumstances will mean increasing the demands on the family. Not only to ensure Jenae and Saxon receive all the support from moving interstate, but also to meet Myra’s needs and establishing a new support and medical network for Myra.

 

Cheryl, who is also in the RAAF, and the children will also have their own challenges of living with each other as a ‘blended family’. The family has no family support network in Brisbane as they are all interstate. This means the family will have to attend to the family’s needs alone and must find additional support. Myra is currently going through an application with NDIS.

 

Myra is PEG fed for all meals and these can take over 2.5 hours for one meal. During this time Myra needs to be supervised and suctioned regularly to avoid aspiration due to her epiglottical dysfunction. Myra has frequent chest infections due to aspiration and has also had her parotid glands tied off and her submandibular glands removed to control the infections.

The family home will need to be modified to enable Myra’s shower commode to be used in the bathroom. In the meantime, Myra is being lifted from her wheelchair to the shower chair. This is unsustainable as Myra weighs over 30kg and the parents are at risk of injury.

Myra has no communication skills. She enjoys the closeness of her family and being held. Myra enjoys the freedom of being out of her chair and usually spends this time in the recovery position, occasionally rolling over on her mat on the floor. Myra’s vision is limited and can only see in contrasting shades such as black and white. Myra can, however identify and track something close by. Myra has almost no use of her limbs due to the cerebral palsy.

Myra has regular seizures and is mildly controlled by medication. Sometimes they are treatable via heavy sedation, other times it is literally days of sleepless nights of crying and screaming which requires constant sedation to control.  

Myra is unable to regulate her own body temperature thermo-regularity disorder Myra is receiving therapy through Therapy Focus and this has been taking place at the school. In particular, Myra’s main concern is her hips and she cannot stand without a standing frame. Her inability to stand from an early age has put her at risk of hip dislocations which is being monitored by medical specialists. Unfortunately, this is deteriorating and will require surgery in the near future.

 

Myra is mobilized using an attendant wheelchair which includes a restraint to support her neck and enable her to maintain control of her head. The chair is heavy and complicated and requires to be transported via wheelchair taxi or wheelchair vehicle, which the family does not currently have. We are urgently trying to raise funds at the moment to purchase a suitable vehicle to be modified for the wheelchair, to enable Myra to attend appointments as well as enabling her to attend family outings.

If you have any questions about Myra and her needs, please contact me anytime on 0428 348 701.

Kind Regards,

Karel