Lifting the Lloyds: Support Saven & Fletcher’s MPS 1 Fight

Some stories are hard to tell - not because they lack hope, but because they carry a weight that most families could never imagine. This is one of those stories.

On March 27th, this faith-filled family of five received a life-altering phone call regarding their son's newborn screening results which led to the discovery that two of their three children, Saven and Fletcher, have MPS 1.

MPS 1 is a rare and progressive genetic disease. It involves the lack of an enzyme that breaks down harmful substances in the body. Left untreated, it could significantly affect their quality of life. Upon further testing, it was found that their specific genotype of MPS 1 is just as rare as the disease itself. It’s involves a later onset, in which symptoms usually appear in teen or adult years, but has already begun affecting their young children. Saven is already showing buildup in her liver and heart - not harmful to her now but a sign that the disease is silently progressing.

This isn’t the mild version the family had prayed for. It’s a form that sits somewhere between the medium and the worst cases — difficult to categorize, but impossible to ignore.

As of right now, the treatment plan is to start ERT (Enzyme Replacement Therapy) at Levine Children's Hospital in Charlotte. These will be weekly transfusions of the missing enzyme, each lasting 4+ hours. However, since ERT does not cross the blood brain barrier, the children will need further treatments. The family is currently connecting with multiple out-of-state hospitals, who have more experience with MPS 1 children, in order to make the best decision for their babies. Other treatment options could include gene therapy or even bone marrow transplants - both causing the family to uproot and move out of state for months.

The light in all of this is that if Fletcher had not been diagnosed with this from his screening, Saven's diagnosis would likely not have been caught until it was too late. Since it was caught at such a young age (which is unheard of in this genotype) - there is hope that the correct treatments can give them a normal life.

It’s an overwhelming storm — emotionally, financially, and physically. Hospital stays. Long drives. Medical decisions that would shake any parent. And still, they must think about their third child, who can’t yet understand why her world is changing too.

But through the tears, confusion, and fear, the Lloyds are holding fast to their faith. They know that God is with them, even in this valley. It is abundantly clear that He has already had His hand in all of this. I am asking for help on their behalf — not just to survive this season financially, but to fight for the futures of Saven and Fletcher and make sure they receive the BEST care.

Your donation will go directly toward:

My goal is to help this family hold onto a sense of normalcy during this incredibly difficult time by easing some of their financial burdens so that they can focus on what matters most - each other.

And above all — we ask for your prayers. Prayers for wisdom. For healing. For peace. For strength. For these babies.

Let’s lift this family together.

Isaiah 41:13 – “For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.”