Jett Burke

What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?

There was an eerie sense of relief because we had been fighting so hard to make it clear that there was something wrong, but then devastation set in. We now knew why he had been so sick all of his short life and were still unable to help him. We felt defeated and helpless. One of the worst moments in our lives that we will never be able to forget.

How has MSD affect your children?

MSD has forced Jett to work harder to accomplish basic tasks, caused him so much pain, and it has taken away life experiences. He has a GJ feeding button through which he receives continuous feeds for 16 hours a day. Jett has been hospitalized more than a dozen times, had three surgeries, and spent literal months in the hospital fighting for his life. He currently is stable thanks to his access to home nursing, medical equipment such as his “shaky” vest, suction machine, heart rate/oxygen monitor, at home oxygen, and having an aggressive but effective sickness and asthma treatment plan in place. He also sees 11 specialists and receives occupational, physical, speech, and feeding team therapy. We are so fortunate that from his first week of life when we reported issues to his primary care doctor that she listened and helped advocate for him with us. Her staff always finds space for her to see him as soon as we identify an issue. His medical team (we call them his fan club, hahaha) is large, but working hard to help him live his best life.

How has MSD affect your entire family?

MSD has forced Jett to work harder to accomplish basic tasks, caused As soon as he was born, we had to withdrawal from the “fun” side of life to meet his needs including mounting doctor appointments. We have become somewhat isolated because of needing to protect Jett from sickness. We also spent his early life in the hospital with repeated admissions sometimes for weeks at a time up to a month. Many times we weren’t sure if he would ever recover. These hospitalizations forced us to be separated and not spend time together collectively as a family unit and pushed us to emotional levels we didn’t know we could handle. We also had to adjust our lifestyle to ensure his siblings were not negatively affected by his chronic sickness, hospitalizations, and our stress. We ultimately have adapted to all of these changes and have learned how to manage emergency situations and overwhelming levels of sadness, anxiety, and fear while being full time working mothers. We also have included Jett’s biological father in our inner circle because he is an integral and beneficial relationship in Jett’s life. The more people to love our son, the better.

What is the hardest part about being an MSD family?

Our journey has been a bit different from other families since Jett is currently our foster son. The first six months of his life we had to fight for our voices to be heard with some crucial people and doctors in a way that other parents may not have had to. We have been hindered by confidentiality and challenged when medical decisions needed made. Fortunately, children services representatives worked to get Jett the most appropriate team and us the internal supports we needed to be his medical advocates. We are so grateful that Children Services responded to our frustrations and his sicknesses and diagnoses how they did. They have given us support to care for him how he needs and helped us learn how to support his biological father as he lives this journey with us.

The constant thoughts of “will this be the last time he can…” “What if this sickness is too much?” The questions and thoughts of his life being shortened live in the forefront of our minds even during times of great joy.

His sisters are included in his daily care where safe and appropriate, and this has helped remove some of the fright for them. They have grown to be such empathetic and loving big sisters. Our entire family has been tasked with becoming medically proficient. Some days it feels like we are all getting an unofficial nursing degree.

What are the biggest misconceptions people have about being an MSD parent?

One misconception that we encounter often is the belief that when he is having a good day he is also getting “better.” Every day MSD takes small pieces of his life from him. Every day we see these tiny changes and live with the reality that he is slowly slipping away.

The other belief is that there is no happiness in caring for a medically complex child with such a short life expectancy. It’s stressful and busy, but this kid is funny! He has a charismatic smile, an infectious laugh, and a spirited personality. And oh my, that hair! ☺ He is a genuine delight to have in our lives. We would fight this MSD beast with him forever if we could. We are so blessed to have been chosen to be his parents.

What is one thing you would tell people about MSD?

It can and will be defeated.

What is one thing you would ask from the world?

We appreciate the thoughts and prayers for healing when our babies are sick, but the current reality is that we need a treatment. The treatment can happen and help many of these children, but it can’t happen without donations. So, please think of these kids often and send that positive healing energy, prayers, or wishes into the atmosphere, but if you can, also donate.

Why are you asking for donations to the foundation?

Without the clinical trial our children will continue to lose abilities and eventually die. Our son’s life will be cut short. His sisters will not grow to know him, and this world will lose a needed light. The parents of children yet to be diagnosed will have no hope and be told “your child is going to die.” This treatment helps a parent look forward to a possibility of life with their child rather than images of planning their child’s funeral. The United MSD Foundation embraced us when all we could say was “we have a child who was diagnosed with MSD.” The MSD organizations around the world have made their goals, objectives, and activities transparent. And, we have seen the results of them using these donations to get one step closer to a treatment/cure. We believe in their mission and value the passion to fund a treatment. We share their desire to save these children.

Latest News?

He is walking now, and is causing a ruckus everywhere ☺ His speech has slowed, but he is starting to say “Dada,” “Mom,” “Yeah,” and “I did that.”
We have started the adoption process, and soon he will be a legal member of our family. We anticipate his biological father attending the adoption, and the three of us will continue to love this child as hard as we can.