Help With Amy

Linda became a single mother when she gave birth to Amy forty years ago. Amy was born a developmentally delayed individual with mild Cerebral Palsy and a rare brain cyst called Dandy-Walker cyst. Amy was also born with underdeveloped nasal airways and Hydrocephalus, where excess cerebral fluid builds up on her brain, causing pressure on the brain. With the first one at birth, doctors performed two surgeries to install a shunt to drain the fluid from around Amy’s brain. The second surgery, only a year later, was performed after her doctors discovered that the first shunt was not sufficiently releasing the pressure. Before the second shunt surgery, doctors performed two other surgeries to expand Amy’s nasal airways so she could breathe unrestricted.

From infancy, doctors did not expect Amy to reach age 12. Yet, through many challenges and setbacks over the years, Linda armored herself with determination, resilience, hard work, and steadfast faith. Did I mention, Linda is a single parent? ---All while juggling full-time work and, at one point, part-time school, to maintain food, shelter, and basic necessities for her and her disabled daughter. And what can I say about Amy? She’s a breath of fresh air with a strong will and a zest for life.

As a toddler, delayed development prevented Amy from learning to walk as would a toddler without delays. It was discovered that Amy’s inability to walk was in part due to inadequately developed Achilles tendons on both her feet, also known as Achilles heel. Around age 3, doctors performed surgery on each heel to correct the impairment. It would be nearly 3 more years before Amy was able to walk conventionally.

Amy was cheerful as a child attending child care and schooling for children with special needs starting at three years old. Unfortunately, at 7 years old, not 2 years after learning to walk for the first time, Amy injured her knee in a fall while playing. The accidental fall to the pavement ruptured the tendons in her right knee, which required surgical repair, subjecting Amy to yet another surgery at such a young age. Because rehab was challenging for the child and she would resist pain, Amy’s right leg did not properly heal. In fact, she coddled her leg in the bent position, and the leg became fixed in the bent position. Doctors attempted to correct the issue with a second surgery, but the damage to the tendon was already too extensive, and the correction did not work. Therefore, Amy forever lost her short-lived ability to walk.

Since age 8, Amy has depended on a wheelchair and crawling to get around. As she grew in age, she developed other health conditions that came with their own set of care and treatment, such as Type 2 Diabetes around age 11 and Hypertension not long after that. Not to omit any tasking procedures this child has had to endure, around age 12, Amy needed dental work for poorly developing oral health associated with her physical development issues. The treating dentist at the time felt it best to insert a breathing tube for a not-so-standard approach to a standard dental procedure. However, the tube caused Amy’s tongue to swell, cutting off her air supply. The entire ordeal suddenly landed Amy in the ICU for 4 days before doctors could reduce the swelling and restore independent breathing.

Amy returned to her happy, cheerful, playful self after a short time. Although Amy was growing older, her mental state remained that of a young child. Nevertheless, Amy is always a breath of fresh air to those who know and love her. She is funny and sociable, and she loved to talk to her family and friends. We will get to why she’s not talking very much these days, later in the story.

In her early 20s, Amy started having very heavy monthly cycles. Her body was still growing but not developing as one without physical developmental delays. Therefore, her reproductive organs were outgrowing their space. Amy needed a partial hysterectomy to correct the issue. During that same time, Amy’s oral health had declined further, and doctors felt it best to extract 8 more of her decaying teeth. Since surgery was again the order of the day for a hysterectomy, it was decided that doctors would also extract the bad teeth while she was under. This was nearly 20 years ago.

I wish I could say that this is where the story ends and that Amy is thriving at the age of 40, getting her crawl on, or rockin’ her wheelchair. But I cannot. I do thank God for the long reprieve. But Amy has new issues today, which is the whole reason for this story and this page.

To recap, over the years, Linda and Amy have endured numerous challenges and underwent numerous surgeries, all while defying the original prognosis that Amy would have a short life. Through it all, Linda kept the faith and the full-time pace to independently take care of herself and her child with disabilities.

About 2 years ago, Amy began having discomfort in her neck. Doctors completed testing and suggested an infection and treated it as such. Within the 2 years, Amy slowly began to lose mobility and other motor functions. Just last month, Amy suffered a stroke which has left her in a debilitated state. Amy also contracted pneumonia from declining ingestion function. Food got into her lungs, creating bacteria that caused the pneumonia. Amy spent 30 days in the hospital for treatment. Although the doctors have yet to definitively pinpoint the cause of the stroke, they have evidence to suggest that the 40-year-old shunts could be no longer sufficiently draining the cerebral fluid from around Amy’s brain. Though cautious about surgery for fear of causing another stroke, the advising Neurosurgeon has expressed that replacing a shunt must be considered. If the shunts are failing, the situation will worsen even if the doctors are uncertain of how to prevent another stroke at this point.

Although Amy still needs rehabilitation for speech, motor functions, and to learn to swallow on her own so the feeding tube can be removed, doctors sent Amy home into her mother’s care. Linda is her daughter’s primary caregiver on a daily basis and now faces the challenges that come with finding help to rehabilitate Amy, who is currently bed-bound and must still be nourished via a feeding tube. Amy’s speech is severely affected; therefore, communicating her needs and discomforts presents its own challenges.

Linda has limited assistance from a family member who moved from Mississippi to assist her, but Linda and Amy need so much more. Amy has medical insurance with Medicare and Medi-Cal. However, Linda has been struggling to get home care assistance coverage. She also cannot seem to get home supplies such as disposable bedding and hygiene items for Amy, that would normally be provided through insurance. Linda has been purchasing the items herself.

Linda has requested her employer allow her to work from home, as she has exhausted her leave and her paycheck now suffers when she must take additional time off work to care for Amy and to make it to follow-up medical appointments. Once her portions of the medical bills arrive, Linda will have all new challenges to contend with, since her finances are already strained.

Linda’s friends have set up this GoFundMe page to solicit compassion from you, the reader. We are asking that you extend a little of yourself to show Linda that she is not alone. She has valiantly upheld her strength and faith for so long, we want to offer a reprieve, in the name of love.