Faith for the fight: Neosho teen deals with rare combination of illnesses – Joplin Globe

By daniellenierenberg

Since late June, life has changed for Rylee Schroeder and her parents, Megan and Levi Schroeder.

It was then the Neosho High School senior sought help for extreme fatigue, shortness of breath, nosebleeds and more. The symptoms, combined with a previously diagnosed issue with low platelets, led Rylees pediatrician to run a series of lab tests.

The news sent the family first to Freeman Hospital West in Joplin, and then Childrens Mercy Hospital in Kansas City.

Doctors discovered Rylees low hemoglobin, platelets and white blood counts were caused by myelodysplastic syndrome. Additional testing revealed the teen has an extremely rare congenital disorder called Shwachman-Diamond syndrome and a TP53 gene mutation that led to the MDS.

Megan said her daughter is only the 36th patient known to have this combination of illnesses, which have progressed to bone marrow failure.

On Friday, Rylee received a stem cell bone marrow transplant at Childrens Mercy in Kansas City, thanks to a donation from her 12-year-old brother Colin.

Megan said her son was a 12/12 match for Rylee. Typically, doctors look for a 10/10 match, or a 5/5 match with a parent. The Be a Match Donor Registry located four 10/10 matches, two donors in the United States and two international donors.

If everything goes well with the transplant, doctors hope to see Colins stem cells begin to take hold in Rylees body between Day 14 to Day 21, post transplant.

Relying on faith

Through everything, Rylee and her family are relying on their faith, as well as support from friends at Racine Christian Church and within the community of Neosho, to get them through the tough days.

We are lucky to have a great church and thankful Sunday serves are online on Facebook, Megan said. We may not be there, but we still feel a part of it, and they are always ready to lift us up.

Many times, Ive thought Im not strong enough to do this, but Im reminded that I am. We are so tired and weary but (God) has us.

Megan said shes used to being the one to offer help through giving and volunteering. Now their family is on the other side, leaning on the support of others.

Our faith means everything to us, Megan said. Without it, we wouldnt be doing as well as we are. Its hard enough as it is. If you dont have something to believe in with your whole heart to guide you and lean on, you would just be lost. It would be overwhelming to take it on yourself.

More about Rylee

Rylee, who turned 17 shortly after her diagnosis, is active in the NHS show choir, choir, Key Club and FCA.

A member of the Racine Christian Church youth leadership team, she was also slated to go to Ireland this summer pre-pandemic with the churchs mission team.

This past Thursday, Rylee was highlighted at the NHS volleyball game for childhood cancer awareness month. On Friday, she was recognized at the home football game.

Members of her show choir helped start a Go Fund Me account earlier this summer to help the family with travel expenses to and from Kansas City. Her youth minister has since created another one to help with the coming months.

Megan said the family always helps at Solomons Dance Studio recitals because the owner, Charity, uses the lessons to teach children to love dance and to love others as well as themselves.

Rylee was able to to attend the recital to watch her sister Erin dance. On the last day of the recital, Charity asked the entire family to come forward, offering prayers over the entire situation.

Rylees small group from the church, which meets on Wednesday evenings, livechats with her, allowing the teen to continue to be part of the discussions.

Before Rylee was admitted to begin the chemo needed prior to the transplant, she asked to rededicate her life to Christ. Megan said she wanted to feel his strength renewed as she went into the fight.

Our close friends all stayed behind after church that Sunday, even though it was last minute, to be witness to her baptism, Megan said. They are some of our strongest supporters. We would be lost without them.

Megan said those friends, steeped in faith, give her strength to sit at the hospital, holding Rylees hand.

I can reach out to any of them to start praying with me to help make me feel stronger when I feel I am failing her, Megan said. I know Gods got this. He is strong all the time even when we can not be strong.

Biblical baubles

Many of Rylee Schroeders friends are wearing a Rally behind Rylee bracelet featuring Isaiah 41:10: So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

A family friend made them to distribute to members of the community. A limited number remain. Information about the bracelets, and Rylees journey, may be found on a Facebook page, Rally Behind Rylee.

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Faith for the fight: Neosho teen deals with rare combination of illnesses - Joplin Globe

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