My Name is Megan Wright and I am an Early Intervention Keyworker. Along my journey as an Early Intervention Keyworker, I have supported many families with varying diagnoses, disability, and individual needs, but none quite like Audrey (5yo) and her family, Mum- Ashlee, Dad- Justin, and little sister - Amari (2yo).
Audrey just three months ago was a child with Epilepsy and Developmental Delays, however in just the last three short months they have watched Audrey's condition quickly deteriorate severely to the stage that we are being told to just support Audrey's quality of life now.
Audrey has now been diagnosed with a Severe Progressive debilitating Neurological Disorder which is completely unknown in the nature of the cause. Her Neurological team has been working around the clock to look for answers to no avail, even reaching out to International Neurologists to seek more advice, opinions or answers.
Audrey now has a lists of diagnoses including:
- Severe Progressive debilitating Neurological Disorder
- Permanent Acquired Brain Injury
- Severe Refractory Epilepsy (Medication Resistant) - Exceeding over 20 Seizures an hour.
- Autism
- ADHD
- Cognitive and Intellectual Impairment
- Speech Impairment
- Gross Motor Impairment - Equivalent of a Hemiplegic Cerebral Palsy GMFCS III
Audrey's condition has declined rapidly in the last three months, losing all ability to walk independently and requires immediate specialist equipment support within all aspects of life.
Audrey's family understandably are incredibly struggling with the news of their daughter's prognosis, To be told that the preservation of Audrey's quality of life is all they have left for their 5-year-old is nothing a parent should ever have to hear. But to add to this disheartening burden, the caring needs for Audrey are far exceeding the capacity of the family during a time of extreme financial and emotional crisis and the family requires emergent assistance to see through this time in their lives.
Simple things such as the cost of groceries, rent, fuel, and expenses are incredibly unobtainable during this time due to Ashlee no longer being able to work due to the caring requirements and Audrey's frequent hospitalizations to prolong and improve the quality of Audrey's life. The family can use all of the support in the world to allow them the time and assistance with living costs to be able to provide for their family during this incredibly difficult time.
The main priorities for the family are:
- The family is at risk of losing their accommodation - which is already a major expense, and Audrey's medical requirements and equipment required do not fit inside the small property, the family will need to relocate when able to suit.
- The family is at risk of losing their transport - which also is not suitable for the assistive technology that Audreys needs to transport now due to mobility such as wheelchairs etc. The family will need to obtain a new disability-specific vehicle as soon as possible to transport Audrey appropriately.
- The family is struggling with the costs of utilities and fuel for medical expenses due to Ashlee's need to not work to care for Audrey during this time and the high costs of living.
- The family is struggling with essentials such as food due to the frequent hospitalizations and costs of living, and Ashlee is unable to financially contribute to the household due to caring needs.
- The family requires counseling and psychological services for themselves to process their grief and trauma.
- The family has not been able to provide Christmas this year for their family due to the costs of living and needing to prioritize the other expenses to survive.
We appreciate any amount of support for Audrey and her family, This amazing family deserves to spend good quality time together.
Organizer and beneficiary
Ashlee Wallace
Beneficiary