An indoor yard sale is being held at the Knights of Columbus hall on Saturday Dec. 2 for Leah Storms, a two-year-old Saugerties girl who was born with end-stage renal failure and has recently been hospitalized in Boston Children’s Hospital with intestinal complications.
Last year around this time the Saugerties Times ran a story about Leah — who was born without kidneys and with other serious health complications — and who was given an ill-fitting PD catheter that leaked and was discharged from Albany Medical to, her doctors up there said, die at home. Well, she didn’t. Leah and her family fought for her life, and won. “Leah is such a fighter,” said her mother, Kristel. “She is just so amazing.”
Since that story ran, a lot has changed, including the addition of the new sister, Carmella, a successful open-heart surgery and the recent celebration of her second birthday.
But there have been some speed bumps. Since birth, Leah has been doing daily and nightly dialysis at home, and gets fed through a nasogastric tube that runs up her nose, down her throat and into her stomach. She is very undersized, with seriously delayed development, and at age two has not yet begun to crawl. Through the love and care of Leah’s parents and her own tenacity and will to live, Leah has surmounted every obstacle that once prevented her from receiving a life-preserving kidney donation.
According to Mom, on the morning of Nov. 5, her second birthday, Leah was crying and unwilling to make eye contact with her dad — highly out of character for her. After giving her medication for a tummy ache, the couple realized there was something much more serious going on, and took her to HealthAlliance Hospital’s Broadway Campus. On the way, said Kristel, Leah had her first-ever seizure in the car. “Craig kept calling her name, and she was scrunching up her hands and making a funny face,” Storms recalled. “We got to Kingston Hospital, they gave her an IV, and then she had another seizure in front of the doctors.” Doctors gave her anti-seizure medications, and transferred her to Albany Medical. Upon reaching Albany Medical, she had her third seizure when they laid in her the bed.
Kristel said her blood oxygen kept dropping, and so they intubated her to keep her breathing pathways open. Kristel then turned to her community of family and friends on social media for emotional support, asking everyone who knew and loved Leah to pray for her.
A CT scan and MRI showed “brightness” on Leah’s brain stem, meaning that something was awry. They gave her steroids for five days, which seemed to overall improve her well-being. However, Kristel said, Leah’s stomach was very rigid and “felt like concrete.” So, much to her parents’ horror, Leah was whisked off for emergency open abdominal surgery. Turns out, Kristel said, that Leah’s small intestine poked a hole through her hernia, and choked it off. Doctors had to cut three inches of small intestine.
“Talk about PTSD,” said Kristel, who explained that Leah’s birthday marked the anniversary of the placement of the wrong-sized PD catheter which nearly killed Leah. “Here was Leah again having another surgery, and it scared me to death.” The Storms were also told there was a chance that Leah had brain damage from the seizures; however, MRIs confirmed that she did not.
Leah is recovering nicely, said Kristel, and has been improving daily. She had a visit with her sister Carmella, which lifted her spirits. “We Facetimed Carmella like four times today,” said Kristel. “Leah lit up. Her face glows. It really is a beautiful thing when you see these two bond so well.”
Kristel and Craig, who works for Krause’s Chocolates in Saugerties, have been shouldering the costs of over $1,000 week to stay in a hotel in Boston and for food and parking as well. They estimate Leah’s stay will likely extend another several weeks.
High school classmate Debbie Gambino of Saugerties has organized the indoor yard sale fundraiser to help offset some of the costs for the Storms. “The [Storms] never shied away from any struggles they encountered with baby Leah’s medical condition,” she said. “I feel after the last two years of watching this family and baby struggle … they just need some help from the community … They are upstanding citizens of this community and are great people in general. They deserve this.”
Gambino said the sale will have a very wide range of items from furniture, toys, clothing outdoor items and household items. A ticket for Ulster Performing Arts Center will be raffled off, as well as storage space from Guardian Self Storage. The sale runs from 9 a.m.-5 p.m. at the K of C’s 19 Barclay St. lodge.
To make donations to the Storms family, visit cota.donorpages.com/PatientOnlineDonation/COTAforLeahS/. Gift cards or checks can be sent to: Kristel & Craig Storm, 262 Main St. Apt. 2, Saugerties, NY 12477.