Jairus- Hope & Healing Ministry

” Be not afraid; just have faith” Mk 5:36

Our mission is to provide love and support to families facing serious childhood medical illnesses.

As parents and families, we all know how difficult having a sick child can be–and then the joy we feel when they recover.  However, for some of our St. Theresa families it can be an ongoing, severe and devastating journey that impacts the entire family.  These families face many challenges and oftentimes we can be sitting next to them in the pew at Mass and have no idea what they are going through.

We are forming a support ministry, THE JAIRUS MINISRTY,  to help these families reach out and have our Parish Family understand their needs and embrace them with our love.  Our hope is to connect and offer support through encouragement, support and prayer.

Jairus will also be a  place where they can share and exchange information or reach out when there is a need.  We hope to have fellow parishioners who may have walked in their shoes be a resource and knowledge base.  Additionally, parishioners who have a desire to help but never knew how or when can now become involved.

The loving hearts of our St. Theresa family is an amazing force and one that we know will offer compassion to our JAIRUS families.

Read on to learn about Haley’s Journey. This is just one of many families. If you have a story you would like to share or would like to be part of this ministry, please contact Annie Baba at AnnieBaba@comcast.net or 703-477-9099

 

On Dec 1, 2014, the day before her two-month appointment, Haley’s primary care team finally recognized the symptoms that we had questioned at every appointment – prolonged yellowing (jaundice) in the skin and eyes.  The next day, we were referred to Johns Hopkins with an urgent appointment to see the GastroIntestinal (GI) team for evaluation.  It was there that we learned that Haley had a chronic, life-threatening liver disease called biliary atresia (BA) that occurs for unknown reasons with 1 in 20,000 newborns.

With biliary atresia, bile that normally aids in digestion was not able to drain from the liver.  There are small tubes called a biliary tree that drain bile from the liver that had been malformed in her liver.  When bile stays in the liver too long, the liver begins to scar (otherwise known as cirrhosis) and eventually causes liver failure.

At just over 2 months of age, Haley underwent a Kasai procedure to temporarily drain bile from the liver to the intestines and stop the liver from further scarring.  This procedure is performed as soon as the diagnosis is made (within days of birth) up to 2 months of age and is generally expected to fail.  The purpose is to temporarily drain bile from the liver until the child is older and stronger to better withstand a liver transplant.

This picture above shows Haley in recovery with a prominent incision across her abdomen from the surgery.

For the next week, we entrusted our baby girl to a healthcare team that we had just met and were forced to accept a diagnosis that we were not prepared to deal with.  At the same time that we were parents to a toddler big sister and a newborn, we were meeting with doctors, nurses, surgeons, and social workers to learn how to be advocates for Haley, her liver disease, and the new normal for our family.

Building a Community of Support

Over nearly 3 years, we have dealt with emergencies, hospitalizations, routine visits, coordinating primary care and specialty care teams, navigating finances, family issues, and 6 total surgeries.  With God’s help, the family, friends, healthcare professionals, and other inspirational families have been enormously important to Haley and our family establishing a new normal.  We believe that St. Theresa’s parish can become another way for Him to provide outreach to families in need through visits, fundraising, and a community that can grow around families that need support.

Where Are We Now

For the last number of months, we have been blessed with good health and have tried to make the most of Haley’s continued well-being.  In fact, for our family vacation this year we drove to Charleston, SC, and snuck away to Disney World before heading back home.

 

On the second day as we walked through the gates of the Magic Kingdom, for a brief moment, my wife and I looked at each other and gave thanks that we were able to share this experience with our children.  After transplant, children are often on varying levels of anti-rejection medications that may not allow them to visit crowded venues.  For those couple of days though, our daughters met princesses, giggled each time we entered their princess bedroom, and hurried excitedly from ride to ride with the wonder of children without a care in the world.

We invite the families who have a child with medical issues to join together for a breakfast gathering to celebrate the new Hope & Healing ministry here at St. Theresa’s!  This is a great opportunity to meet other families in your parish community that may be on a similar journey and to learn more about the Hope & Healing ministry.  We have already met a few inspirational families and have identified needs for major surgeries, expensive treatments, community support outreach, and we look forward to learning more to help shape the Hope & Healing ministry.  Whether your child is headed toward a major surgery, has a persistent medical need, or you are on the “other side” of surgery, you know that a community of family and friends gives strength.
Please RSVP to Annie Baba at AnnieBaba@comcast.net or 703-477-9099 or Marianne Guidos at 703-729-2334 or dmoutreach@sainttheresaparish.com