Help Lily Maintain Blind Services and Therapies

Lily is a young lady that says everyday “Even I can do the hardest things”. Lily can only really see up to 3ft away making her world within that small space.  They say it takes a village and we know that Lily has an amazing community behind her. We know it’s time to ask for your help. 

 Recent changes in healthcare coverage have our family facing a huge deductible each year, so we decided to create a gofundme campaign to help us cover the cost for Lily’s medical care, specifically for her Occupational and Speech Therapies. We believe these therapies are crucial in maintaining Lily’s quality of life and preparing her for future successes. The gift of sight, speech and other necessities to help this young lady prepare to become part of the inclusive workforce we are all advocating for right now. 

If you are able, we would be so grateful for any donations you can make. If you’re unable to donate at this time, we’d love if you could pass along the link to those you think would be interested in Lily’s story.  Both actions will help us out so much!



This year Lily received an invitation to attend the Austin Ballet and was given the amazing gift of eSight glasses, a new assistive technology that has been created for the blind community (watch here). Technological advancements are only half the battle when it comes to supporting Lily’s growth and success. Her weekly therapies are just as important.


 
For more info on the specifics of Lily's situation, please continue to read below. 


Lily is a beautiful and bubbly 9-year old who lives in Austin, TX with her Mom, Dad, and little brother. Lily was diagnosed at 3 months with Optic Nerve Hypoplasia (ONH). ONH is a congenital disorder characterized by the underdevelopment of the optic nerves. Underdeveloped optic nerves transmit less “pixels” from the eye to the brain resulting in reduced vision. Because of this, Lily is considered legally blind as the use of glasses cannot correct her sight to normal range. Lily uses a white cane to travel and is currently learning Braille in addition to her 3rd-grade studies. Children with ONH often also deal with cognitive habits that mimic the Autism Spectrum, like Sensory Processing Disorder and Neurodiversity.


Lily maintains weekly Occupational and Speech Therapies to help her develop a proper sensory input diet, which is crucial in improving her quality of life. She works on a range of physical activities that feed her nervous system to regulate her sensory processing. This enables Lily to succeed at school and at home by increasing her emotional maturity and self-awareness. 


As a result of constant therapy, we see fewer behavioral issues in school, less social isolation, and an increased capacity to learn and function in an inclusive general education setting. These sessions are pivotal for her growth moving her forward through her childhood: her future independence and quality of life depend on the support we give now. Her therapy is not optional.

Lily is worth more than a deductible. Lily is worth more than the economic status of her parents. 

As a young family, we find ourselves continually struggling with how to get ahead in life and at the same time balance these medical costs. If both parents work we lose the option of Medicaid helping with those expenses. If both parents don't work, we can't pay our bills. It shouldn't be this hard to provide support for our daughter, and yet it’s always an uphill financial battle. Each session costs us $105 and currently, she attends speech therapy twice a week and occupational therapy twice a week. That amounts to $420 a week, $1680 a month, and $21,000 a year. 


So, we are in a unique situation that by trying to advance in life, we are now faced down with Lily’s extensive medical costs. With the support we receive from this campaign we will be better prepared to face the financial realities of providing this type of care and Lily will be able to maintain her ability to learn and grow, in a way that only therapy can provide for her. We want our daughter to be prepared to go out into this world with the skills she needs to achieve her dreams. Thank you all so much for your support!



Finally, we wouldn't be where we are today without the amazing team that pitches in and helps Lily every step of the way. From her therapists at KidWorks Therapy in Austin, TX, to the specialists that come visit her at school, and to her teachers at Zilker Elementary who are committed to the inclusive education that is so beneficial to her. It takes a village and I am eternally thankful to the professionals that love and care for my child like their own. 

 

Further information:


Optic Nerve Hypoplasia 


Sensory Processing Disorder 


Autism Spectrum Disorder 


Benefits of Occupational Therapy for Autism 


Therapy Budget:


Occupational Therapy: 2 sessions per week,  $105 per session

Speech Therapy: 2 sessions per week, $105 per session

4 sessions weekly, $105 per session = $420 weekly, $1680 a month


On average, Lily receives therapy for 50 weeks out of the year:

$420 per week x 50 weeks = $21,000 a year for Therapy Services