Fisher

On Tuesday of this week we passed a bill that was special to our district. House File 933 was a bill that implemented a new license for pediatric palliative care, a type of hospice specifically for children. There are currently only three such facilities in the United States, none in Iowa. The connection to our district, and the catalyst for this bill, is a young boy from Grinnell, Mason Sieck. At the age of 2, Mason was diagnosed with a rare disease called “Gardner’s Syndrome,” a form of cancer marked by Desmoid tumors and a tendency to develop other cancers. Most people with this disease have either one or two tumors with it, or no tumors at all. Mason had over 40 tumors throughout his body that caused extreme amounts of pain. During one of his many hospital stays, his parents, Shanna and Curtis Sieck, received the news no parent wants to hear. Mason needed to be in hospice care as all that could be done for him was pain management. The only facility the Sieck’s could find that could handle a situation like Mason’s was in Minneapolis, five hours away from home in Grinnell. Fortunately, Mason loved the environment there and the family felt very welcome and comfortable. Sadly, Mason went to be with the Lord in March of 2021 at age 7.

From this tragic loss of Mason, and the experience of finding a wonderful hospice home so far away, the seeds were planted with Shanna, Mason’s mom, to turn their grief into action and form a non-profit organization aimed at creating a similar hospice facility here in Iowa. The non-profit, known as “Mason’s Lighthouse,” has come a long way. They have been fundraising and developing plans to build a hospice facility on a plot of land that has been donated in Iowa City. Mason’s Lighthouse will be able to accommodate up to 3 families at a time in pediatric hospice with each hospice room connected to a family suite, and also have four suites for respite care for other children that do not need hospice, but need 24 hour medical care.

The legislature became involved along the way because the project hit a snag with licensure. This form of hospice and respite care is new, especially to Iowa, and none of the existing licenses for nursing homes and hospices would work. Shanna came to us early this legislative session with a request to create a license that would be a better fit, and we were glad to be able to accommodate that request. I worked with House Health and Human Services chairman, Rep. Carter Nordman, and our House HHS staff to draft this bill and bring it to the floor for passage, with Rep. Eddie Andrews floor managing the bill on Tuesday. The bill passed the House 97-0 and goes on to the Senate. I was honored to host Shanna beside me in the House chamber as the bill was brought up and passed.

I would like to commend Shanna on the excellent work she is doing in this effort, Mason’s memory will live on forever as this vision for Mason’s Lighthouse becomes reality. This facility will serve other Iowa families during their times of sorrow and tragedy here on Iowa soil, closer to those families homes. This newsletter only captures a tiny fraction of all that Shanna and her team have accomplished, if you want to learn more about this project, please go to masonslighthouse.org

As always, I look forward to seeing you at the capitol or in the district.

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Dean Fisher, a Republican from Montour, represents District 53 in the Iowa House.