Say hello to Theresa and the cutest little three-year-old on the planet, Francis. Francis and Theresa, his grandmother and caregiver alongside her husband, are current residents at Ronald McDonald House New York.
Early on, Francis developed an exceedingly rare disease known as IPEX syndrome that has had him and Theresa in and out of hospitals consistently since he was only five weeks old.
What is IPEX Syndrome?
IPEX Syndrome is a rare genetic disorder that mainly affects infant boys. It usually begins at birth with intestinal issues which lead to a host of bigger issues including diabetes, eczema, and more. The condition affects about 1 in every 1.6 million people (about the population of West Virginia), and most often presents in early infancy.
The syndrome is characterized by severe enteropathy, chronic dermatitis, early onset type I diabetes mellitus (T1DM), thyroid disease and other autoimmune symptoms.
From www.chop.edu/conditions-diseases/ipex-syndrome
Francis is three years-old now and has spent three long years in critical care under the supervision of multiple doctors. This means Theresa has been living in hospitals on a permanent basis since before the coronavirus Pandemic.
Theresa and Francis have been residents off and on at Ronald McDonald House New York since December 2021.
Theresa kindly agreed to sit for an interview with a member of RMH-NY’s staff in September of last year to tell her and Francis’ story. What came from it was the tale of a selfless caregiver who would do anything to heal her child and a gifted artist who finds her peace in painting.
This is Theresa’s story.
When your child is hospitalized…
As the mother of a hospitalized infant, a woman has very few options. Nothing will stop her from being at her kid’s side 24 hours a day and all seven days of every week. Yet, living so many days inside a sterilized city of beige walls that vocalize the constant beeping of medical machines and the rushed screaming from PICU (Pediatric Intensive Care Unit) nurses. Then, there is that ‘hospital’ smell. All these elements packaged together created an intense amount of stress that Theresa would not even wish on her worst enemy.
After months in any hospital, it all becomes too much.
Theresa explained,
“The sound of the medical machines is so taxing, and, at some point, you have to separate yourself from it all. You can't separate yourself from your kid and you don't want to. But to keep your sanity, you must find peace and solace away from all the noise. RMH-NY gives you that peace.”
Before getting to Theresa and Francis’ arrival at Ronald McDonald House New York, let’s walk down the road that led them both to 405 East 73rd street in New York, NY.
Francis’ Hospital history and eventual diagnosis
Originally, Theresa took Francis into the hospital after noticing some irregularities in the five-month-old's health. When they received the first diagnosis, Theresa was so relieved to hear that Francis was simply dehydrated and that it would be seven days in the hospital to get him good and rehydrated and they would be home by the end of the week.
Seven months later, Francis and Theresa were still ‘hydrating’ at the hospital. Francis was not getting well and remained under constant supervision. Theresa stayed briefly at Ronald McDonald House New York Metro on Long Island, but in November 2021, on Thanksgiving Day of all days, Francis was taken to Morgan Stanley Children's Hospital in New York City where he received a lifesaving five organ transplant procedure.
Theresa immediately relocated to the hospital in NYC and did not have the time or energy to make daily trips back and forth between Long Island and New York City’s Morgan Stanley Children’s Hospital to be with Francis. So, Theresa moved from Long Island to the city and into Ronald McDonald House New York to be a stone’s throw away from Francis in the rare moments she even left his side at all.
Ronald McDonald House New York’s light is always on
Francis and Theresa stayed at Ronald McDonald House New York while Francis recovered from that first major surgery.
Francis’ Thanksgiving Day surgery was a success and quickly after Theresa and Francis were able to move back home to Long Island with the understanding that they would travel back and forth to Morgan Stanley several times a month for check-ups with specialists.
Theresa felt uncomfortable asking for a room at RMH-NY for the subsequent visits. If she was only there a night or two, she didn’t want to bother the House with having to prepare a whole room just for her to sleep there once and then exit.
When she spoke to her social worker about the dilemma, her social worker was quick to correct Theresa’s feelings on the subject. She told Theresa plainly that if she were going to be in NYC for a night, she would stay at Ronald McDonald House New York. Period.
When the social worker tells it like it is…
The social worker affirmed that “it didn't matter if it is for one night or for months and months at a time, you should always ask for a room at the House because that is what RMH-NY is there for.”
She went on to explain that the parents or the caregiver’s wellbeing is one of the most important links to a child's ability to recover. If the caregiver is fresh, rested, and relaxed, they can be fully present for their child at every moment needed..
Since that moment, every time that Theresa and Francis stay in NYC, they have stayed at Ronald McDonald House New York. No questions asked.
Theresa’s holidays at the House
Theresa first moved in December 2021. Home on Long Island would have been the ideal place for she and Francis to be for the holidays, but Theresa very candidly told the interviewer,
“You want to be home for the holidays. But the staff at the House made it feel like home. They bring the holiday to you and to your children.”
Theresa smiled and continued speaking to the way Ronald McDonald House New York celebrated holidays.
“They celebrate ALL the holidays”
she said with a smile. She also made a point to say that everyone at the House participated in the celebrations down to the very last social worker.
Speaking of social workers...
The social workers at Ronald McDonald House New York
Theresa was succinct when asked about the social workers at Ronald McDonald house New York.
Her only words:
The social workers are magnificent.
A Helpful House
Even if there wasn’t a social worker around to answer questions, Theresa always felt every staff member was extremely approachable and always willing to lend a helping hand.
She elaborated on a moment while living at the House when she needed help with no social workers in sight. Theresa quickly found a staff member in the playroom.
The person she spotted was a member of the RMH-NY Programs team. Theresa was amazed that the person stopped what they were doing when she arrived and immediately sat down with her to answer her questions and solve the problem at hand.
Ronald McDonald House New York Programs for Caregivers
Speaking of Programs, Theresa was very vocal about the extensive variety of Programs, both for the kids and the adult caregivers created by the House. RMH-NY not only had programs curated for every member of the family no matter their age, but they created programs that families could utilize while staying at the House as well as healthy programmatic options to keep House alumni engaged when they had moved back home.
The Blavatnik Family Foundation Wellness Center
In-House programs geared toward caregivers like Theresa have been a specific focus for Ronald McDonald House New York in recent years.
The Blavatnik Family Foundation recently sponsored the addition of a new Wellness Center at Ronald McDonald House New York. It sits on the 11th floor with a stunning view of Midtown Manhattan.
The Blavatnik Family Foundation Wellness Center is open seven days a week and supports more than 25 different programs and activities throughout the month specifically geared toward caregivers and the parents of little ones staying at the House.
The in-house retreat provides respite and essential self-care support for the caregiver's mind, body, and spirit. The Blavatnik Family Foundation has made these services more accessible by creating a beautifully designed and relaxing environment that restores and rejuvenates.
As part of the House's mission to meet the needs of its international guests, monthly program offerings include seasonally and regionally themed cooking classes, knitting lessons, DIY projects, guided walking tours of New York City and so much more.
The House offers caregiver-dedicated events, including Spa Nights and Nutrition Workshop Circles. These allow caregivers to relax, be pampered, and learn how to optimize their own health and wellness.
Other weekly and monthly wellness activities include, but are not limited to:
- Cooking Classes
- Various Craft-Making Classes
- Yoga Classes
- Guided Meditations
- Stress Management Sessions
- Spa Services
- Salon Services
- Music Therapy Classes
- Massage Services
- Various Fitness Classes
- Caregiver Support Classes
- Knitting and Crocheting Classes
- Art Classes
- Special Seasonal Events
The Necessary Oxygen to Give Care
Think about the moments before you're about to take off in an airplane. The flight crew demonstrates (usually with lackluster pizazz) the safety features of the aircraft. During the emergency evacuation portion of the demonstration, the team pulls out the oxygen masks (that fall from the ceiling) and shows the passengers how to put the mask on properly, pulling the straps like so to secure it in place.
Then, without fail, they remind passengers to use the mask on themselves before assisting the child that is flying next to them.
Now, think of that in terms of the caregiver.
Just as a passenger without oxygen will likely pass out and not be able to care for their neighbor, a caregiver needs oxygen to keep caring for their child as well as they can.
Wellness is the oxygen of the caregiver.
Without taking care of themselves and attending to their own wellness, they will be much less apt to care for their child the way they wish they could.
The Why Behind Wellness
Caregivers take on more responsibility than one can imagine when their child receives a life-threatening diagnosis. Not only do they have to act as the rock for their sick child, but many of them have other children that beg for the same care and attention. Beyond the care of their family, some caregivers have no choice but to continue to work full time during their stay in the House. Navigating all these responsibilities rarely leaves an extra moment throughout the week for these superheroes to take a breath.
Ronald McDonald House New York understands the well-being of the caregiver directly affects a child’s treatment and its outcome. For that reason, the House strives to create programming that is desirable for these caregivers. The House offers the space needed for caregivers to confidently utilize the programs and facilities that will provide them that simple chance to breathe and regroup.
Theresa believes RMH-NY has taken the idea of ‘care of the caregiver’ to a whole new level.
The Nuanced Perfection of Caregiver Wellness at RMH-NY
Theresa once made a comment to a staff member about how much she loved to draw and within the day, art supplies were delivered to her room.
Interestingly, the wellness center team led by manager Jillian McKiernan, recognized a common creative streak running through many members of the House this past summer.
It was Art on the 11th Floor with Angelica, a weekly gathering where caregivers have a chance to lean on one another and build community through art and sharing.
Angelica Serrano, the intuitive and creative expert behind Art on the 11th Floor with Angelica quickly noticed that five caregivers in the group were particularly coordinated and equally talented artistically.
With the blessings of the caregivers, Angelica created an afternoon pop-up art gallery in the Wellness Center, to highlight the touching and bold work these caregivers had created through their time in the House. Theresa was one of those caregivers.
Life | Vida
Theresa and four other equally creative caregivers, with the support of Angelica’s guiding influence, opened the Life | Vida gallery in the Blavatnik Family Foundation Wellness Center at Ronald McDonald House New York for one very special afternoon last summer.
Life | Vida explored the day-to-day journey of a caregiver. Through paintings, sculpting, and several other visual art mediums used, these five caregivers told the story of their lives and honored the children they love.
The caregiver pop-up art gallery was a wonderful success and was followed by food in the living room before the caregiver/artists-in-residence were shipped back upstairs for after-show massages to end the evening.
Theresa’s photographs of Francis, and her beautiful self-portrait, were among the hits of the afternoon. They not only resonated with the gallery goers but gave Theresa an especially important channel to funnel her feelings about her life as a caregiver and her relationship with Francis.
Life | Vida was officially a hit.
Most importantly, Theresa got to sit down for a massage to take in the experience.
An Always Home for Theresa and Francis
Theresa’s caregiving skills are superbly fashioned and her love for Francis is louder than all of New York City when the Giants are playing on Superbowl Sunday.
Ronald McDonald House New York’s focus is on enhancing those two things and making room for these amazing caregivers and their children to call this House a Home.
Theresa spoke about the elevated level of personalized service that she receives while staying at the House.
"I tell people if you dropped off the moon and you landed here with nothing, they'd cloth you, they'd feed you. You feel like you are at home. You don't feel like you are in a place where you are lost."
Theresa added,
"Ronald McDonald House New York is my safe haven. I feel safe here. I feel comfortable here. I know when I leave the hospital, I have a safe place to go."
Ronald McDonald House New York’s Promise
Theresa and Francis and so any other families will always have a safe place to stay together while receiving treatment in NYC hospitals. Ronald McDonald House New York welcomes them with open arms and a promise to support both the children with life-threatening illnesses as well as the caregivers that stay close to take care of their little one.
