Maizey McLaughlin

Maizey spent the first 4 years of her life undiagnosed in a Chinese orphanage. She received loving care under a special program who matched nannies with the children and served as their primary caretakers. Her milestones, therapies, and daily life were documented in a beautiful booklet we were lucky enough to inherit when she became our daughter. She was strong and healthy (despite her obvious but undiagnosed condition).

She was adopted at age 4 by another American family. They were the first to discover her diagnosis of Spinal Muscular Atrophy. Spinal Muscular Atrophy is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord and taking away the ability to walk, eat or breathe. It is one of the greatest genetic causes of death for infants. SMA affects approximately one in 10,000 babies.

Her former family’s shock and mourning, however, never turned into action. They refused to accept what was. Maizey declined - lost her ability to sit up, eat, move. Bedbound and attached 24-7 to a g-tube, pulled from school, shunned from the family, denied a wheelchair, she was finally given the best gift they could offer her – relinquishment of parental rights and the chance to be adopted again.

Maizey came into our home at 7 years old and the size of a 3-year old and just over 20 lbs. Her condition was extreme and neglect evident. Her rehabilitation was scary, torturous, and back-breaking. She had several surgeries to repair and regain what she had lost through neglect. Watching her grow, return to health, and even regain much of what she lost was miraculous. For our girl who had lost so much because her SMA needs and all of her care needs were so neglected, access to brand new SMA treatments was a gift which she began in 2018. She has been given new hope, slowly gaining back skills that were so prematurely taken from her.

As Maizey and her sisters (one of whom also has SMA type 2) grow, so do her needs, particularly with regard to her living environment and transportation. Our home needs several adaptations to make it more functional for both Maizey and the rest of our family to live their best lives. Our van will also need to be replaced to keep Maizey in therapies and receiving treatments she needs from specialists all over the state. Our state does not provide funding for vehicles or home adaptations for people like Maizey. Because they are not intellectually disabled, they do not qualify for “disabled” funding in our state.

All funds generated from our fundraising efforts are going to support these home adaptations and savings toward a new adapted vehicle purchase within the next few years. We hope to add a hoyer ceiling lift to our home as well as alter her bathroom to meet her needs as she heads into her teenage years.

Maizey endures a lot as part of her “every day” in order to fight SMA. She uses a power wheelchair for mobility, has a BiPap machine for breathing support during her sleep, uses pulse oximeter and cough assist machines, nebulizer, a vest for lung therapy and respiratory support, foot braces, knee braces, wrist splints, ramps, therapy equipment and more. She has had several surgeries for tendon releases, spinal rods to support her collapsing skeletal structure to help her breathe and digest, and g-tube placement for nutritional support. We see half a dozen specialists on a regular basis, she receives bi-annual infusion treatments to help increase her bone density. She attends weekly pool therapy to help with strength and to reduce pain and contractures.

Maizey is a typical-minded 13 year-old girl with hopes and dreams for a future. She lives life with spirit and drive and does not let SMA define her. She is beautiful, quiet and kind, and she is an amazing artist. She loves to sing and listen to praise and worship music. She loves space and hopes to be included in space exploration as a disabled person. She is also an aspiring model. Maizey’s gentle spirit draws people to her and she speaks love and encouragement to others and impacts so many people she comes in contact with.

We are so thankful for the loving community who pours into us as well. Together, we can make an accessible, equal life for Maizey where she is not limited by lack of proper equipment or access needs. We are thankful for the opportunity to give her the freedom to discover and live to her full potential.