Help Maisie Get Her Miracle

Maisie is one in a million.

Well, she's one in a million to those that know her, but seriously, is 1 in 100,000 to the rest of the world. Maisie has an incredibly rare genetic disorder with a prevalence of 1 in 100,000 individuals called Hurler's Disease - and there is no cure. 

At 12 months old, Maisie has seen more specialists, had more blood drawn, more hearing tests, and X-rays and scans taken than most middle-aged adults. At 12 months old, Maisie has already endured a five-hour surgery and three four-hour long enzyme replacement infusions. Maisie is a fighter.

Maisie after her first five-hour surgery.

Maisie's story.

In December of 2018, at ten months old, Maisie was hospitalized for a severe RSV infection. At that time, doctors had not assumed anything more serious was going on with her, until it was. During her seven-day hospital stay, Maisie had difficulty breathing on her own and couldn't eat. Special measures were taken to relieve her body of the physical stress it was under and help her to breath easier. It was a mystery to the doctors that she wasn't reacting, as many of their other infant patients had, to the typical RSV treatment plans. After a more thorough exam and additional tests and scans, doctors took special note of her new found and observed abnormalities (skeletal deformities, facial abnormalities, hearing loss, enlarged liver and spleen, and hernia), and suggested it was time to pursue genetic testing.

Several weeks later, results from the genetic tests came back and it was confirmed that Maisie had been born with the most severe case of MPS I (a mucopolysaccharide disease also called Hurler, Hurler-Scheie and Scheie syndrome). She became the 1 in 100,000 babies born with the illness.

Maisie recovering in the hospital.

Maisie needs a miracle.

With a little research on Hurler's Syndrome you will see that there is no cure and it can be fatal. Maisie's mom, Allison Eaton, and dad, Steve Solberg, are trying their hardest to get their sweet baby all the care she needs to live as normal of a life as one can with this illness, and need help - although they will never ask for it.

While there is no cure for this disease, there are treatments available to slow the progression of the symptoms and discomforts associated with it. One of those treatments is called an enzyme infusion replacement therapy that requires Mom (Allison) and Maisie to visit an infusion center weekly for five-hours at a time. Maisie is currently receiving these infusion treatments - and they are helping - but the benefits of the treatment only last a few days before they wear off. Often, Maisie has to wait for several more days before she can experience her next bout of relief as it is not constant. 

Maisie at her second infusion.

Additionally, another, more invasive treatment is also available to Maisie that potentially offers more consistent relief of her symptoms but takes more time, effort, and planning, and requires a donor. To undergo that treatment option, Maisie needs a Bone Marrow Transplant (BMT). Again, this will not cure the disease but it will give her the best shot at a more positive prognosis. 

Maisie was placed on a recipient BMT list in Minneapolis at the University of MN - Children's Hospital soon after her diagnosis and has since been waiting for "the call" that indicates there has been a match. That call came last week. Before the transplant can take place however, Maisie is required to do a fourteen-day work up in the hospital, followed by intensive chemotherapy for another extended period of time (ten days). After her body is cleared (literally and figuratively) for the actual transplant, she will then need to remain in close proximity to the hospital for +100 days. 

Mom and Dad moving Maisie to her own hospital room

The journey ahead is promising but a long one, and there will undoubtedly be curves and speed bumps to overcome. Maisie lives in Fargo, ND with her mom and dad, and four other siblings (Charles - 15, Ashton - 14, Nathan - 14, and Brennan - 5) - 235 miles away from Minneapolis, where her medical team is located and care is taking place. 

(L-R: Cody, Nathan, Charles, Allison, Maisie, Ashley, Brennan, Steve, and Ashton at Maisie's Baptism)

Allison works with special needs students at a Fargo Elementary School and will need to take leave without pay in order to care for Maisie. Steve, who is also experiencing his own major health issues and was hospitalized at Mayo in Rochester for several weeks (also in 2018), has limited abilities to help with Maisie's treatment down in Minneapolis. 

Both Allison and Steve are doing the best they can, but they still need help. Medical bills are mounting and taking leave without pay will make managing living expenses, and travel to and from Fargo to Minneapolis difficult, to say the least. Having to separate the family and be away from home for over three months is also worrisome. 

Celebrating Mom (Allison) and Maisie's 1st Birthday

This family needs a miracle for Maisie, and a miracle to get through this. Help Maisie get her miracle, and help this family worry a little less about missing home and paying the bills, and focus more on the procedures Maisie is soon to endure. 

Your donations will go towards helping Maisie get the care she so desperately needs, and to her family, who have taken significant time off from work to be by her side through every step of her journey. No donation is too small. If you are unable to donate, we ask that you please share this link with your friends and family, and to please keep Maisie and her entire family and care team in your thoughts and prayers.

Every action you take to help Maisie and her family in their time of need is greatly appreciated and does not go unnoticed. Thank you!