About April Shaw
May 15, 2016
Andrea Mitcham for April Shaw from the Metro Detroit area
To All It May Concern:
Hello. My name is April Shaw. I just turned 6 years old, Cinco de Mayo (May 5th, 2016). My mommy (I call her Gorgeous and she calls me the same) says her pregnancy with me was fairly normal, as was her pregnancy with my 19 year old sister, Auguste. My mommy is a widowed/single mother and honorably discharged veteran of the United States Army. She cannot work a traditional job because she has to be home to take care of me when I get sick and can’t go to school. My family was so happy when I was born and took such good care of me. I started sleeping through the night fairly early and still wake up early, bright eyed and bushy tailed each morning. I was always and still am the happiest little person you could ever encounter even when I am sick, which is often, unfortunately.
My Grandma (my sister and I called her Ms. Mae, and she truly was our family’s rock) was diagnosed with and lost her battle with Breast Cancer six months later in 2011, around the same time I was diagnosed with SMA (Spinal Muscular Atrophy, Type II) at the age of 14 months. This disease causes severe weakness and degeneration of voluntary muscles in infants and children, taking away their ability to move independently. Before her death, Ms. Mae talked about how beautiful and smart I was inside and out. We attend Greater New Light Missionary Baptist Church in Detroit where she was the “Peppermint Lady”. Everyone went to her for their daily peppermint fix, a kind word, hug or something as simple as a smile. I am told that I have her caring and calm spirit, and that I am so much like her in many wonderful ways. Our Pastor, Dr. David W. Roquemore of over 30 years said that I would do and be something very special and would be a testament of how truly remarkable God is. I held my bottles and toys as most babies did at my age, imitated wiping my mommy’s mouth when I ate, lifted my legs in the air to play with my toes and played joyfully in my crib, humming and singing if I awoke before my mommy got me up for the day. I was rolling from one end of the room to the other trying to reach a toy I wanted. I smiled, talked and was really polite, speaking to everyone that crossed my path when we accompanied my Grandma to the Karmanos Cancer Center and everyone was surprised when they heard me speak as clearly as I did. I always said “Hi” or “thank you so much” when given something. It was a beautiful thing, my mommy says.
Unfortunately, my mommy noticed that I wasn’t standing or pushing up on my legs as most babies, did. We went to the doctor and had a Neurologist test the reflexes in my feet, ankles, knees, arms, hands, elbows, my trunk area, neck and head. Needless to say, these tests showed severe weakness in my entire body. Many more tests were done and my blood was sent out of town to a Genetic Specialist a month after my Grandma died. I had been officially diagnosed with SMA Type II, a fatal, neurological muscle disease that gets progressively worse over time. There is no cure for this disease. I became a member of the Muscular Dystrophy Association where they helped educate my family. They helped us obtain Children’s Special Health Care Services, which helps pay for most medical/therapeutic equipment that Medicaid will NOT pay for. The doctors say that with this disease, I am not expected to ever walk and should be bound to a wheelchair for life. All the muscles that other children and adults take for granted, I don’t have the luxury of enjoying. Among the things that are difficult, or I am not able to do for myself include the ability to hold objects in my hands including pencils, crayons and scissors, put on and tie my shoes, put my clothes on by myself, comb my hair, wash my face, paint my fingernails or toenails, lift my arms, sit up on my own, roll over (I have to be turned over by someone). My mommy gets up between 6 and 12 times every single night to turn me, change me, readjust my bi-pap mask, give me water to drink or even just to check on me so her sleep is never uninterrupted. This cannot be easy for her. I am confined to a wheelchair and totally dependent on others to meet all of my needs, including transfer and transport, assistance with eating, using the restroom and all other activities of daily living. My ability to swallow and eat on my own and cough up mucus as well as blowing my nose when I catch a cold are all expected to diminish. Because of this, my mommy arranged for me to have feeding tube surgery just after my 3rd birthday, which has truly helped us avoid several hospital stays because of dehydration and pneumonia. This tube allows me to get liquids and nutrition as well as medicine in my body even when I don’t feel hungry or thirsty because I am sick. This lack of movement allows a simple cold to turn into pneumonia. I have been hospitalized with pneumonia 6 times since the age of 2 (just 3 years). This disease can kill me and others like me and my quality of life is expected to severely decrease due to my condition.
My family has noticed much of this decrease so my mommy and caregivers have to do virtually everything for me at a time when I am in Kindergarten and should be running around, swimming, falling down scraping a knee, roller skating or simply taking a walk with my mommy. I have to be turned over multiple times throughout the night so my body doesn’t get numb. I can’t say that my arm or leg has fallen asleep, I can only wake up asking for my mom to turn me over or change my diaper (going to the potty is difficult because I can’t sit straight up so I have a special potty chair that reclines and holds me in place while I go or wait to go). Usually when my mommy changes my position, I go back to sleep until I need changing or another position change (we have noticed that when writing with a pencil or pen or coloring with crayons, I have difficulty pressing down hard enough to actually be able to see the coloring or writing so most times, I color with markers because I don’t have to work so hard to make an impression on the paper. Unfortunately as I get older and go on to higher grades, this will prove problematic because schoolwork can’t be done with markers ). I can barely hold my arms up to drink from my special cups, and need someone to feed me most meals because I have extreme difficulty using a spoon or fork without spilling the contents. My respiratory functioning is severely compromised and many times, before I can get over one cold or virus with one set of symptoms, another one comes and when I should be getting better, I start getting sick again. This is a scary situation to be in and I know my mom worries about me. She sends me to school wearing hospital masks to keep others around me from infecting me or to keep me from infecting them when I have an uncontrollable cough or sneeze episode. I love going to school and love God. This disease has killed many and can kill me as well as others more like me so my quality of life is expected to severely decrease due to this condition and my family has to work extra hard trying to prevent me from getting sick at all. Instead of classical music that my mommy used to play for me during naps or bed time, I told her ‘I don’t want that classical, mommy, I want JESUS!”
Sometimes I break into song whether at church or not. I love for my mom to sing “Yes, Jesus Loves Me” during naptime or bedtime. I can’t do much for myself, and most of my time is spent sitting in my car seat, specialized stroller or other special chair with straps to keep me from falling and keeps me safe. I watch educational Leap Frog DVDs and a few recreational movies and shows because we don’t have cable, which my mommy says is fine with her. We don’t live beyond our means and don’t even have credit card bills. I have an exceptional memory and am still very polite and extremely social.
I use so many different machines 3 or more times every single day as a precautionary measure with treatments lasting about 30 minutes each time and up to 5 times, increasing from 30 minutes to 1 ½ hours when I am even the least bit congested because my cough is too weak to be effective. I have just as many specialized machines and equipment to help my mom make my home life as comfortable as she possibly can. Most machines need to be nearby when I sleep. I have a bi-pap machine with a ventilator even though I don’t have sleep apnea, an oxygen machine that filters into it when necessary, a pulse oximeter that gauges my oxygen level and helps my mom to know it’s time to take me to the hospital (sometimes other symptoms will not be present but this machine will show that my respiratory system is in extreme distress and I am in need of my doctor’s care immediately. At this point, we go to urgent care or directly to the emergency room to have x-rays of my chest in search of pneumonia). I use a nebulizer for breathing treatments even though I don’t have asthma. This machine helps keep congestion and mucus that may develop in my chest and lungs loose, a cough assist machine that forcefully blows air into my lungs and pulls it out along with phlegm and also loosen mucus and congestion in order to minimize/prevent pneumonia which I am prone to because of this condition. I have a suction machine to release the mucus once it comes to the surface of my nose or throat because I cannot blow my nose or cough strongly enough. Most of these machines are necessary throughout every day and night. Power outages are a real concern because without it, the 8 hour internal battery of them isn’t enough when the power is out for more than that. We have a small generator but it isn’t powerful enough for all of these to be in use and we have nowhere to keep it when it’s in use without it being stolen. We are in desperate need of a generator that would service the whole house because if we have to sacrifice the food in the fridge and use of the stove in order to power the machines that work to keep me healthy, that is not helping me or my family and is a very scary thought for us.
I wear leg and foot braces most of the day and even to bed to help prevent my feet from curving in from the lack of pressure that standing would allow. I sometimes wear hand braces to keep my wrists straight, a standing frame that gives my body the illusion of standing although I am held up by straps. I wear what is called a “turtle shell or body jacket (TLSO)”, which is a brace that is in two pieces, front and back that connect by straps to keep my back aligned to help prevent or slow down the osteoporosis that is inevitable with this condition. This back brace gives me support to my upper trunk area while sitting, using my standing frame or in my power chair so I don’t have to focus on holding myself up, instead I can use my arms and hands freely and with confidence while coloring, reading, doing arts and crafts, playing with toys or interacting with other children and my family or just relaxing.
I love using my power chair (it’s a beautiful PINK, my favorite color!), I can go where I want to go (outside of our home), I don’t have to wait for my mom to push me but can only use it to go to doctor’s appointments because Medicaid transportation only takes us to those places. I play on the Miracle League of Michigan’s baseball team, their bowling teams, go to MDA’s (Muscular Dystrophy Association) summer day camps and doing lots of other things with different organizations that are not “doctor’s appointments” so the independence I would have using my power chair, I don’t have because our family doesn’t have a wheelchair accessible vehicle. I like taking walks with my mommy in our neighborhood but have to get home before the sun goes down because we couldn’t afford to have the lights installed on my chair. We had a 2000 Chevy Venture but it was constantly breaking down so we ended up having to junk it because it was taking up space and interfered with my school bus pickup and drop off in front of the house. Although we were truly grateful for it, it wasn’t wheelchair accessible but gave us the space to carry my necessary equipment. Our van was just sitting at our house because the repairs couldn’t be done since we didn’t have any extra money for things like this nor for a car note. My family receives disability for me and my mommy receives a small compensation from the office of Veteran’s affairs that combined, only equals approximately $800 per month. We would be eternally grateful if you know of anyone or any organizations that could donate a reliable wheelchair accessible vehicle to my family. This would be such a big help to me and my family as it would allow me the independence to get around and do more things for myself. This is very important for a toddler my age and in my condition. It would help my self-esteem, independence, and overall development into a responsible citizen in our society and the world as a whole. I know there are organizations that help families in our situation but all that my mommy has contacted have not been fruitful.
We are also in desperate need of portable air conditioners for our home. We currently reside in a Section 8 program home. We have one in the front of the house that cools the living room area. My sister has a window air conditioner in her room because hers is the only window in our home that can accommodate a traditional one. My room and my mom’s room both require a portable one because of the shape of the windows. Extreme heat affects my little body negatively. It drains me and makes me noticeably less active than I already am. My body gets so weak that I start to look sick and dehydrated with sunken eyes even when I am drinking enough fluids and getting nutrition from my feeding tube which I call “my tubie button”. Although we are grateful for our home, it does not accommodate my power chair or the Hoyer lift we recently received. It goes through our kitchen to the living room but can’t be used in my bedroom because it won’t fit through my door. I’m 6 now and growing so fast so I’m getting heavier quickly. My mom already has back and neck problems so this would greatly benefit her as well. Our family could truly benefit from a wheelchair accessible ranch home with an open floorplan in our area so I could remain in my current school which I love so much. An accessible home would also be beneficial to me because I would be able to reach the light switches, cabinets, sinks, bathtub and many other things that are crucial to my independence. Currently, my chair can only go from outside through our kitchen door and into our living room. I can’t even use it to get into my room because there is not enough space.
There are specialized and very costly seating options and activity tables that are available but Medicaid will not pay for because I have a specially made stroller/high chair with a tray table they believe is sufficient. The problem is the options we are not authorized for are lighter weight and more practical for trips to the park or visiting family. These are also very sturdy and easy to clean/disinfect. The tray on my stroller is not meant for someone other than me to lean on and is fragile but these special tables can withstand my mommy helping me push down when doing arts and crafts or placing a heavy toy or object on it without any problems. We have used these options at Early Intervention Diagnostic Center where I began my early childhood education as well as at therapy and found that these uncovered seating options are imperative to my independence as I color, play with toys, feed myself finger foods and allows me to safely do many things other children can do but in the comfort of a chair with a table that is made just for me.
Insurance also feels certain accessories that we believe are truly necessary for my power chair are what they call “cosmetic” and will not cover them. Safety accessories that are mostly already on the chair and only requires them to be activated, include a canopy to cover me while in my power chair from the dangerous sun rays and diminishes my already compromised energy. A second accessory is lights that in dark hours (like when it gets dark extremely early in the winter months or storms early in the day and darkness descends) would help protect me by allowing motorists to see me when we have to cross streets while in my chair. A third accessory I would greatly benefit from is a seat elevator, that allows my seat to go up to a certain height like while in school and using different types of tables for activities, having breakfast or lunch or allows me to reach things that are otherwise unavailable to me (a light switch, kitchen cabinets and sink, bathroom sink, a book or other item on a higher than normal shelf, like when we visit the library, that is difficult for me to reach without the help of someone else or using a computer at a library desk that may be higher than what my chair currently allows). The fourth accessory they feel is cosmetic and not a covered item is the leg rest extension. This accessory allows me to lift my legs, giving me a way to reposition my legs which would help me avoid my legs falling asleep or developing other issues due to lack of movement. My mommy believes that if the people who made the decisions about what is so called cosmetic had a child or family member with a disability like the one I am forced to live with or one with any other wheelchair bound for life person and had to endure what children as young as 2 years old up to adulthood, that the rules would truly be different. How can something so life changing, which allows a safe type of independence for people like us who are already at a disadvantage, be “cosmetic?”
My mom worked 11 years with 3rd Circuit Court until her 4th month of pregnancy with me. They say God does everything for a reason, but who would have guessed that my condition would be the reason she needed to be home around the clock? Wow! My mommy and I volunteered at an organization called the DO Foundation for 6 months, an organization that works to help homeless individuals get back on track to self-sufficiency. They named me the “motivational speaker” of the organization because I always had lively conversation for you, some was understandable; some was not. Sorry, I was only 2 years old, what do you expect? (smile) We spent most of our days there; at least 8 hours a day until my mommy started a part time job cleaning a school after-hours. She had to cut our volunteer hours down to under 4 until I was hospitalized and had to make some much needed adjustments to be sure she could maximize her time at home to care for me while waiting for the seasonal job (September through January). She worked 4 Christmas seasons at Volunteers of America, Michigan’s Adopt-A-Family Christmas Program. She loved working this program because it allowed her to help other very low/fixed income families like ours who are in need during this stressful but beautiful time of the year. Before graduating from Spring Arbor University with a Bachelor’s of Arts Degree in Family Life Education, she interned at Development Centers, Inc. for 6 months in the Housing Department while pregnant with me and well after my birth.
I am so grateful for a mommy who does all she can to ensure my well-being and who loves me unconditionally. I know she does because she shows me every day and would do anything for me. That is why I am writing you today. I would like some help for my “Gorgeous” mommy. I know she gets tired and could use a break, a vacation and help with making my existence in our home a little more tolerable. Although all the equipment I wear and use daily and nightly makes me look like a robot, and I’m sure it’s really hard for her and my sister to see me endure, I know she does it all because in the end, it will help me. All these preventative measures will extend my life and assist with my quality of life. My mommy cannot work a traditional 9 to 5 job as I have countless specialists and regular doctor’s appointments all over the State of Michigan, Ann Arbor, Royal Oak, downtown Detroit, and Dearborn, to name a few. These visits are usually all day, from first thing in the morning to late in the afternoon. Although we are truly grateful for Medicaid Transportation, it is not the fastest mode of transportation as we have to wait sometimes hours for a ride to get us back home depending on where the appointment is and how soon a driver can be dispatched to our location.
My older sister, Auguste, whose dad died when she was only 2 years old (he had a heart attack playing basketball so after 5 years in the Army, where we met, he was not aware he had a congenital heart disease), is really helpful with me. She plays with me, cares for me, watches movies with me, exercises my body, massages me, helps me eat, and sometimes gives my mommy a much needed and deserved break when she asks for it. She asks our mommy if she can watch me while mom takes a nap, rests, catches a nap or cook our meals. She does these things without being asked sometimes. How many 19 year olds do you know that do this? Auguste was in her 2nd year at Henry Ford College until she moved out of state. She once wanted to be a lawyer or forensics specialist, at one time, she told our mom she wanted to be a Pediatric Rehabilitation Specialist so she can help me and other children like me, or more recently, a Medical Assistant Manager. Isn’t that amazing? That’s my big sister, I love her so much.
I believe my mommy could really use some extra help with me because it cannot be easy in the position she is as a widowed/veteran/single mother. We’re really grateful to have received some help a few days a week. We’ve been introduced to someone who has become a special part of our family. I am so proud of her. To now be in a position to require state assistance, food stamps and not be able to maintain our household the way she would like is a struggle. I watch her with her bubbly attitude as she tends to my sister and I, prays with us, plays with me, sings to me, laughs with me, plays pretend with me, reads with me, watches movies with me and teaches me.
As much as I love going to church every Sunday; I love my Sunday school teachers, but with extreme temperatures of 80-90 degrees, my mommy has had to keep me home for weeks at a time. Unfortunately, the extreme heat weakens my already weak body and causes me to get sick. Our church does not have air conditioning and with the few fans we have, it still isn’t sufficient for my mommy to feel comfortable taking me. We also do not have wheelchair accessibility for the three levels of our church so I have no independence there. My mommy has to wait for someone to come help her carry my stroller chair into the door, down the stairs for my Sunday school class and then wait for someone to help her take me up the two flights once church services start. I am the only wheelchair bound person who is a member of our church but we sometimes have visitors who can’t come in unless someone is there to carry them (young or old, small or large) up or down the stairs depending on what service they attend. I know my immediate family as well as my church family would be truly grateful for any help someone could give regarding these two costly issues of our church. I know no one individual or organization can address all of the issues my family at home as well as my church family faces, but prayerfully, between different organizations, all of our needs may be attempted.
I honestly believe I receive my positive energy from her as well as my sister and we believe in our hearts that this diagnosis is not destined for us; we believe that I will be a healed and walking testimony for others as this is just a delay with which we need help. And if it’s NOT God’s will that I walk, we still believe that we are a blessed family with much to offer the world if just given the opportunity. We thank you in advance for taking the time to consider our family for any type of help you could provide or any resources you could direct us to. We are truly grateful for you taking the time to read our thoughts. I know it is too much to take in but I know God gave me to my mommy because he knew she would do all that she could to take care of me and I love her soooooo much!
Prayerfully and Sincerely from the Metro Detroit area,
April Shaw, Andrea and Auguste Mitcham
email@example.com (248) 763-9992