Jaylen Garrett

What was the cause of death?

The cause of death on the Death Certificate is Multiple Sulfatase Deficiency. However, MSD caused her little body to just shut down. She had just started on hospice and we expected to be on hospice for years. Her little body was not absorbing her formula feedings and her kidneys started shutting down.

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

The feelings we had initially, when Jaylen was diagnosed with MSD, was disbelief and shock. This MUST be a mistake. I think we were in denial for a long time. How could our baby have something SO rare?? It just seemed impossible and unreal.

How has MSD affected your children?

Jaylen was sick all her little life. She was tested for Cystic Fibrosis at 6 months old. She ran high fevers, had pneumonia many times, multiple ear infections, etc. She was always diagnosed as ‘failure to thrive.’ She had three sets of ear tubes, her adenoids out, her tonsils out, MRI’s, many genetic texts, ERG’s……the list goes on and on. However, the first REAL sign that we different from the normal ‘just being a little behind’ was vision problems. She was found to be legally blind around 18 months. Despite all of this, she was a happy and active toddler. Then she began to lose skills she had, words she knew, and her physical abilities. After she was diagnosed with MSD at 6, she declined rapidly. Jaylen had many of the horrible things that come with MSD, like seizures, feeding tubes, breathing issues, skin problems, and complete muscle wasting so she couldn’t even hold her head up. However, right until the very end, Jaylen touched even the toughest, hardest hearts that nobody else could get to. She could be so sick but no matter what, she could always light up the room and bring a smile to your face.

How has losing your child affected your entire family?

Jaylen was our only child. She was our life. She was a true earth angel and she touched so many people’s lives, even people that never met her. She melted even the hardest hearts and still does, to this day. Losing Jaylen was/is like losing life period. I can’t offer any advice to anyone that loses a child. There is NO greater pain on this earth and there are NO words to describe it.

What is the hardest part about being an MSD family?

What frustrates me the most about MSD is that people just don’t get it. These angels are beautiful and they don’t see a sick child, they see a beautiful child that might be a little delayed. Just because they don’t look sick to someone, has no bearing on the fact that their time is limited. When people see a sick child with cancer and they look sick, people seem to get that. Yes, that’s heartbreaking but at least most of those children have a chance to beat the cancer. They have a chance. Our babies, they have NOTHING. This is going to take their lives whether they are beautiful or not, MSD will be terminal without treatment.

What is one thing you would ask from the world?

It’s hard to think that just because there are so few children with MSD, there isn’t a big concern about finding a cure and helping these children. I can promise you one thing, if this was YOUR child, you would have a different outlook.

What has it been like without your child?

Along with your child, all your hopes and dreams for them and their future and your future die, too. There are no soccer games or cheerleading or dance or proms or college or weddings or grandbabies. Everything is gone. Life will never be the same and the pain will never go away. Instead of living for your child, you are just living so that you can someday be with your child. We have met some amazing people through this journey who have been there for us and have offered us more support and love than we could have imagined. You definitely see what people are made of through these times.