Friday, September 6, 2019

Book launch and toy drive to raise funds and awareness for pediatric illnesses

Image courtesy of Courtney PostvanderBurg
at Tailwind Portraits
By Lorraine Glowczak

St. Ann’s Episcopal Church will host its annual Welcome Back Weekend beginning this Saturday, September 7th from 1 p.m. to 5 p.m., and continuing into Sunday, September 8th. The purpose of the annual event is to welcome back and invite the community, parishioners and non-parishioners alike, to enjoy each other’s company and welcome everyone back after the beautiful summer vacation.

The weekend will be filled with many fun activities on both days. On Sunday – in addition to a BBQ after the 10 a.m. service, there will also be an opportunity to donate toy’s to Libby’s Ouchie Box and Make-A-Wish foundation as well as attend a book launch from 2 p.m. to 4:30 p.m.

The book, “One Child, One Million Prayers: Driving through Hell in a Minivan,” by Windham author, Norma Fitts was recently published in July. It’s the heartwarming and, often heart wrenching true story with touches of humor about a mother and an adopted daughter – who are both liver transplant recipients. But this story is not any ordinary transplant recipient story (as if there is an ordinary in such circumstances) – the tale includes the “coincidence” of how it all occurred and how it affected the mother and daughter as well as all who loved them.

Norma, at the age of six, was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha 1), an inherited condition that raises the risk of liver and lung disease. Some with the Alpha 1 gene live with very few issues and have a healthy life, but in Norma’s case, she required a liver transplant. all the medical difficulties, she receives a new liver, grows into a beautiful young woman and marries the man of her dreams. Alpha 1 is only inherited if both sets of parents carry the gene. But this was of no concern as Norma was told she wouldn’t be able to have children. A miracle occurred and she and her husband, Adam, had their first child, a girl named Chloe. All is perfect – until they discover that Adam carries the Alpha 1 gene, too – and thus, so does Chloe.

To prevent the possibility of having additional children who might inherit the same need for a liver or lung transplant, they decide against having any more biological children, but to adopt instead. Norma prayed that she would get a child who most needed her. “I prayed for a child whose needs I could meet and be mothered best by me,” Norma explained in the book.  

Maya was that daughter. Born prematurely, Maya is eventually diagnosed with liver cancer – and required a liver transplant at a very young age.

Norma takes the reader back and forth in time, comparing her experience and that of Maya’s. Sharing the “hell” that all families experience in such circumstances – Norma is candid. Honest about the fact that she, as a child was always in the spotlight (and news media attention), leaving older sister, Jess, feeling dismissed, alone and unseen as parents and others concentrate on Norma’s health and survival.
As a result, Norma shows appreciation to her sister - now the aunt to Chloe, Maya and adopted son, Lonnie. “Having Jess take care of Chloe and Lonnie was wonderful because she knew what it was like to be a sister of a sick child – she knew their needs and was able to advocate for them,” Norma stated in a phone interview. “She was a blessing.”

Learn more about Norma’s experience this Sunday. There will be snacks and beverages available and donations for Make-A-Wish Maine will be accepted at the snack table.

Norma has donated fifty books to Camp Sunshine as well as providing two signed copies that were a part of a Make-A-Wish Maine fundraiser – her two books raised $1600.

As for the donation of toys, they will be go towards Libby's Ouchie Box Toy Drive that was created by the Rulman family. Libby Rulman, a survivor of childhood cancer, collects toys for the Ouchie Box, located at Maine Children's Cancer Program (MCCP). 

After a clinic visit at MCCP, which may include anything from chemotherapy to a check-up, patients are allowed to choose a prize from the box. The Ouchie Box gives pediatric cancer patients something to look forward to on their clinic day. It often brings smiles after tears.

The Rulman family will be on-site collecting donations for Libby's Ouchie Box Toy Drive. They accept toys for children of all ages: newborns to teens. Gift cards and cash donations are also welcome to help families affected by pediatric cancer.

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