Makayla W.

Child, Minimal Change Disease

Makayla is a beautiful little 9-year-old girl with frequently relapsing, steroid-dependent Nephrotic Syndrome. Her primary diagnosis is Minimal Change Disease. Makayla was diagnosed just two months after her 2nd birthday, so she hasn’t really known what life is like without living with kidney disease. Since Makayla is steroid-dependent, she has only gone a few months in the last seven years without steroids. Although we are incredibly thankful she responds to steroids when relapsing, the side effects are painful and disheartening.

Makayla is an extremely smart, straight A student, and a very wise and funny young girl who loves anything girly. She loves cheerleading and softball, and always takes on a leadership role in everything she does. She is compassionate and loving to everyone, loves animals, and has the best laugh ever! She has two older brothers, whom she loves more than anything, and a McNab dog.

Makayla has been accepted into an 18-month non-steroidal clinical trial, which could potentially provide the medical treatment she needs to live her life off steroids once and for all. The prognosis for Makayla’s disease is unknown at this time. We have attempted numerous medications in the seven years she has had the disease, none of which have resulted in her being able to stop taking steroids completely. If this treatment option does not work, she will likely endure regular infusions of Rituximab. Although this has worked in the past and allowed Makayla to stop the prednisone for three months at a time, the side effects are scary! Plus, her doctors are hundreds of miles from home, so it requires a lot of travel as well.

The attitude of this amazing little girl fills us with pride. She does not ever feel sorry for herself; she thinks of others well more than she does herself. She used to be very private about her disease until the opportunity of this medical trial came into our lives. As soon as she realized she may help other children, she was open to telling her story. Please say a prayer for the health and wellness of our pineapple princess. God bless!