The family of a 5-year-old girl with two rare medical disorders is turning to the Marian Congregation's founder, Blessed Stanislaus Papczynski, for help.
Blessed Stanislaus (1631-1701) has proved himself to be a powerful intercessor for sick children. So with that in mind, the family of Ella Grace is praying to him for good health and strength of Ella. She suffers from two gastrointestinal motility disorders that have come to define her young life and the lives of her family in terms of the medical attention Ella needs - though her medical condition has not defined Ella as a person.
In May, Ella visited the National Shrine of The Divine Mercy in Stockbridge, Mass., with her mother, grandmother, and a family friend. The Provincial Superior for the Marians, the Very Rev. Fr. Kaz Chwalek, MIC, said a private Mass for them in the Marians' residence and then prayed over Ella with a relic of Blessed Stanislaus.
"It was a beautiful day," says Ella's mother, Jamie, who has been praying to Blessed Stanislaus upon the recommendation of her mother, Kathy, a longtime Marian Helper. "We're just praying for something that gives Ella a better quality of life. It's been a long road."
Indeed, it's been a road pockmarked by uncertainty, anxiety, hospitals, and physical pain.
A Complex Disorder
In April 2011, Jamie and her husband Nathan of Orchard Park, N.Y., began noticing that Ella's stomach was becoming extremely distended and hard. She was unable to produce a bowel movement and began to refuse food. She also complained her "tummy hurt her, and she was fatigued.
After many tests by medical experts in Buffalo, N.Y., Rochester, N.Y, and Boston, Mass., Ella was finally diagnosed with two gastrointestinal motility disorders called "gastoparesis" and "colonic neuropathy pseudo obstruction." Simply put: Ella's entire colon is unable to function and doesn't contract. Three quarters of her colon is also swollen with gas.
She is one of 200 children in the United States diagnosed yearly with this neuropathy pseudo obstruction. Also, her stomach nerves do not produce strong contractions, therefore delaying stomach emptying. Various medications and surgeries have done little to help.
She has an external cecostomy tube through which her parents are able to flush her gastrointestinal tract using saline. Other medications are also administered. She also has been on a medication that has helped relieve some of the symptoms for gastroparesis. Unfortunately, as of last week, the government no longer allows the drug to be imported. Approval of the drug is pending review by the Food and Drug Administration. No medication has helped her gastrointestinal tract. Ella is undergoing more testing this month in hopes of a solution for her disorders.
Ella's family requests that people petition their local representative to cosponsor a bill called HR 842 (Functional Gastrointestinal and Motility Research Enhancement Act) that would bolster federal research into functional gastrointestinal and motility disorders and that would call on the Food and Drug Administration to improve review, approval, and oversight of treatments for such disorders.This bill would also allow more funding for research.
For more information on the bill and how to contact your local representative click here.
A Happy Child
Despite all the pain and struggles, Ella remains "a giving and loving child who is very strong," Jamie says. "She does whatever she needs to do because she wants her tummy to be better. This poor little girl has suffered a lot, yet she doesn't let anyone know."
Indeed, Ella, a soon-to-be kindergartener, puts her focus on helping others, including a girl in her town who suffers from eosinophilic esophagitis, a rare allergic inflammatory disease of the esophagus. Ella hopes to raise money for research of that disease.
"Ella cares so much about others," says Jamie. "She wants to make others happy. She says a prayer whenever a friend is sick. She prays for other people and wants to make other people better. She colors pictures for people in nursing homes. When you look at her, your heart melts."
Meanwhile, Ella's family now are also concerned that their youngest of three children, 22-month-old Joshua, may be showing signs of a similar disorder to Ella's.
The Power of Prayer
So what does the Marians' Founder, Blessed Stanislaus, have to do with all this? First of all, Ella's family believes in the power of prayer.
"Prayer is what has gotten us through," says Jamie. "Now with Joshua, our prayers are 'times two.' We don't ask why God is doing this. These struggles are meant for us at this time, and we deal with it."
Ella's family believes that only through prayer will the right doctors, the right procedures, and the right timing of appointments open up to them.
Why Blessed Stanislaus?
As for Blessed Stanislaus, he has proven to be a powerful intercessor for thousands of people around the world who have called upon him in prayer.
He was beatified in 2007 following a miracle attributed to his intercession that involved a Polish boy whose heart had stopped beating while in his mother's womb. The doctor had declared the boy dead. The following day, a second test confirmed that the fetus had no heartbeat. Meanwhile, a family member had been praying a novena to Stanislaus, and his prayers were answered when, on April 4, 2001 - on the eighth day of his novena - the fetus regained a heartbeat. The child was born without complications on Oct. 17, 2001.
The miracle cleared the 300-year-long path to the beatification of Blessed Stanislaus.
Moreover, Blessed Stanislaus himself suffered from severe illness as a child, but was healed, he believed, through the intercession of the Blessed Mother.
"Over the years, we have received many, many reports of graces received through the intercession of Blessed Stanislaus," says Fr. Kaz. "We know we can turn to him in prayer."
With that said, we ask that you pray for Ella's family. We recommend the following prayer for a special grace through the intercession of ?Blessed Stanislaus Papczy?ski:
God, our Father, Who in Your unfathomable Providence gave us in Blessed Father Stanislaus a successful intercessor before Your throne, grant me through his intercession the grace of good health and strength for Ella, Joshua, and their entire family, for which I beg You. Also grant that in accord with his example I may faithfully fulfill Your most holy will. Through Christ our Lord. Amen.
Then pray an Our Father, a Hail Mary, and a ?Glory Be.
We also invite you to pray a novena for the intention of receiving graces?through the intercession of Blessed Stanislaus. Here's how.
Jesus, we trust in You!
Please visit the following websites for further information about Ella's disorders:
ABOUTKIDSGI.ORG
pedsgi.org
Also, visit Ella's Facebook page for updates.
