Please help Joey and his family

To tell the story of Joey and his family, we must start at the beginning, where all their love and fight for each other began…

Kristina, breast cancer survivor and mom to 3 amazing children; Jacob- 13, Joey- 10, and Valentina- 8, is the strongest, most loving, and most compassionate person you will ever meet. She brought her beautiful boy Joey into the world on August 21st, 2012, at just 34 weeks. Joey was admitted to the NICU immediately and stayed for 2 weeks. Once he was discharged, mom worried that he wasn't growing as quickly his older brother. Within a month, it became clear that there was a problem, while it would take 5 years to find the cause Mom fought tirelessly for answers and to keep Joey happy and as healthy as possible.

At 1 month old, Joey was diagnosed with Failure to Thrive, and a g/j tube was placed. For over 2 years he was not able to drink/eat by mouth and all his nutrition came from his tube feeds. At 3 years old, Joey stabilized, and the g/j tube was removed! Mom enjoyed watching Joey grow and develop but always had a feeling that there was still an underlying medical issue that had not been uncovered.

When Joey turned 4 years old, he began aspirating. This caused constant reoccurring pneumonia. He was hospitalized many many times, often with only days or a week between each hospitalization. Joey was seen weekly at Hasbro's pulmonary department with many attempts to address the aspirational pneumonia and all the damage that it was doing to his little lungs. Ultimately, it was decided that at 5 years old Joey would no longer be able to eat or drink by mouth, it was too dangerous for his respiratory system and once again, a g-tube was placed.

At this time, genetics testing began to come back and showed multiple mutations, one being strongly suggestive of lung disease. In early 2018, at just 7 years old Joey was diagnosed with Interstitial Lung Disease which would ultimately cause lung failure. Towards the end 2018, Joey’s needs and prognosis were so rare and extreme that Hasbro was unable to continue to manage his treatment. Joey was referred to the only 2 children’s hospitals that could help, thankfully one was close by. All of Joey’s care was transferred to Boston Children's Hospital where Kristina learned that her son's lungs were much more damaged than they thought. Joey was admitted to Boston Children’s Hospital (BCH) in December 2018 (another Christmas in the hospital) and would not come home until just before Christmas in December 2019.

On February 5th, 2019, Joey was in full lung failure and was added to the lung transplant list, within 5 months a match was found!!! Joey was getting new lungs! On July 3rd, 2019, Joey entered into a 14-hour surgery where he received a double lung transplant. The transplant was a SUCCESS and while Joey was still in-patient at BCH for 3 months, he was doing so much better. Joey was transferred to Franciscan Children’s Medical Rehabilitation Program in October of 2019 and with rapid progress made it home just before Christmas! Mom remembers it being the best Christmas, Joey wasn’t in the hospital for the first Christmas in many years! They were all home together, Joey had new lungs and finally NO oxygen!

https://www.providencejournal.com/story/news/2019/12/15/to-single-mom-in-providence-7-year-old-son-with-new-lungs-is-my-miracle/2082104007/

https://www.necn.com/news/local/7-year-old-rhode-island-boy-heads-home-after-year-in-hospital/2204831/

While Joey still needed his g-tube for feedings and over 42 meds each day, he was finally able to go to school! He had friends and was enjoying a normal daily routine for the first time in 4 years. Then in March of 2020, COVID hit the US and their world got smaller again. Being a transplant survivor and at acute risk for life-threatening reactions to common viruses and infections, this was a very scary time for the family.

The family stayed home together and quarantined away from COVID for 10 months until it struck their household in January 2021. It was everyone’s worst nightmare, Joey got COVID. He very quickly entered into acute organ rejection. He required oxygen, again, and the heartbreaking cycle of constant hospitalizations started all over again. Joey’s body was so weak that he contracted many colds and the rhinovirus. His medical team at BCH began to complete CAT scans and bronchoscopies monthly instead of every 6 months and they showed more scar tissues and Crystallized Lungs seen in COVID patients.

As if life wasn’t hard, and heartbreaking, enough for this family, in the middle of Joey's rejection Mom was diagnosed with Breast Cancer. On Joey’s 9th birthday, mom was admitted for biopsies. Kristina was diagnosed with Triple-negative breast cancer (TNBC) Stage 3. This is considered an aggressive cancer and they were instructed that there was no time to delay any treatment. On September 29th, 2021, Valentina’s 7th birthday, Mom began her 1st chemotherapy treatment. She continued this cycle once a week for 12 weeks. After a short break her 2nd session of 4 weeks infusions began.

In April of 2022 mom underwent a double mastectomy, while she was recovering the unimaginable happened. Joey contracted the worst infection a lung transplant patient can get, RSV. Chronic rejection followed and Mom knew they were running out of options. She was not in the clear with her own health though and in June had to undergo 25 sessions of daily radiation. In July mom was given wonderful news… No Evidence of Disease. She is a cancer survivor! Mom’s reconstruction and other preventative relapse surgeries are on hold for now as Joey has taken a horrible turn.

During a month-long hospital stay in September one last chance treatment was discussed for Joey, it wouldn’t cure him but would offer the potential of more time, only a 20% chance, but who wouldn’t take that? The family went home for a week to prepare but sadly Joey’s lung function was declining so rapidly that it was no longer a viable option. The Pediatric Advanced Care Team (PACT) was brought on board to assist with his Chronic Lung Allograft Dysfunction (CLAD), but little was able to be done and the worst discussions began to happen… quality of life, end of life care, comfort measures...

The day before Thanksgiving, Joey was admitted again but this time he was discharged home with hospice care, Since the beginning of December, the sole goal of Joey’s entire family is to make him as comfortable and happy as possible. Kristina, Jacob, and Valentina pray to have Joey home for Christmas… they experienced too few together and will cherish the memories of this one forever.

We ask that you take some time to pray for this family, share their story, and donate if you can. None of us can imagine the journey they have been on, nor what is in front of them. Mom has not been able to work for some time and their expenses continue to grow rapidly. When the time comes, Kristina would like to honor Joey’s life with services fit for the amazing boy that he is. Please help contribute to this fund so that we can take some of that burden from her.