RTS Testimonials
“Matthew Preston Hubbard was born on June 5, 1979 in a hospital in Radford VA. Matthew had an amazing life in spite of the many obstacles he faced. He was unique in many ways. He had Rubinstein-Taybi Syndrome (RTS) and was the most verbal non-verbal person you could ever meet. He spoke volumes with his beautiful blue eyes and infectious smile. His thumbs up could brighten the darkest day. Matthew loved life and lived it to the fullest. He gave unconditional love to those blessed to know him. He knew no strangers and his joy was contagious. Matthew was first diagnosed with Follicular Non-Hodgkin’s Lymphoma in February 2012. You would have never known anything was wrong because Matthew never complained. In January, 2012, Matthew had a giant lingual tonsil removed at VCU in Richmond, VA that was blocking his airway and causing life threatening sleep apnea. During the procedure his epiglottis was damage so he aspirated and had to have a feeding tube. After placing the feeding tube they scanned Matthew and saw enlarged lymph glands, and a PET scan confirmed he had cancer. In 2016, Matthew’s cancer changed to stage 4 and he had two years of Rituxan at VCU which is about 3 hours from our house. We would go down to the Richmond, VA area the day before his cancer treatment and also stay in the hotel the night after this cancer treatment because he often felt too ill and needed time to recover. We did this for 2 years. After 2 years of Rituxan, Matthew had a normal PET scan. On Jan 23, 2019, Matthew started doubling over in pain during his tube feedings. Our local hospitals could not figure this out and I was finally able to get him into UVA in Charlottesville, VA in Oct 2019. A PET scan revealed a large mass in his pancreas. This time he had Diffused Large B Cell Non-Hodgkin’s Lymphoma. This is an aggressive cancer. He had six months of chemo. He would be admitted to the hospital for four days (22 hours a day) of chemo, a day of Rituxan and hours of Cytoxin. Thank God I was always allowed to stay in the room with him. Matthew was amazing. He’d be pushing his IV pole around the halls waving at the nurses during his chemo treatments. We would go to Charlotteville, VA (2.5 hours away from our home) and stay in a hotel the day before he was to be admitted to the hospital for chemo and we would stay at the hotel the night he was discharged because this was so draining for both of us. After 6 months of chemo Matthew again had a negative PET scan. Then in June 2020, he woke up one morning and was staggering when he walked. I called UVA and rushed him to the UVA ER. He was admitted and a PET scan showed a cancerous tumor on his spine. This was our life. Matthew was in and out of UVA for a month at a time. We also had many visits to doctors in Charlottesville and more hotel stays. When we came home from UVA on Oct 13, 2020; he could no longer walk, but his little face would light up when he had a visitor. He was still all smiles and giving thumbs up to anyone who visited him. Matthew was a fighter. Like I said, he loved life and loved people. The cancer just kept spreading and my sweet baby passed away at home on Nov 25, 2020. Thanks to Mal’s Pals Foundation and their amazing contribution, I was able to pay off some of my mounting credit card debt I accumulated after years of transporting Matthew to medical appointments and hospitals. For 41 years I prayed God would heal Matthew and now he is healed and whole. I can rejoice in this but I miss him so much. We were a team. I just praise God for trusting me with Matthew for 41 years.”
From the ever so strong, Kathy Hubbard, Matthew’s Mom and biggest fan
Little Levi is a sweet boy who was diagnosed with Rubinstein Taybi Syndrome as a baby. In the years since Levi has been here, he has made a lasting impression. His sweet smile is only the tip of the iceberg when you meet this little ham. He is growing his language skills daily, he loves singing songs and making his Mama smile, and oh! The outfits! Levi was hitting milestones even when the prognosis that comes with RTS said that he wouldn’t. It was not until recently in 2021 that Levi began having seizures. This is a common development in children with RTS. Being the rockstar advocate that Levi’s mom, Angel is, she reached out on Facebook to ask for advice in our RTS group. She will always have the support of her online RTS family and I hope that she knows she can call on us day or night, 365. The beauty of the internet is the connections we can build as “rare disease” parents. There are only 1 in 150-350,000 individuals worldwide and even those statistics are outdated. The information available online is weak at best. We, as parents of children with RTS, have come to rely on the information from others to help us navigate this process.. called The Rest Of Our Lives.
Levi’s mom reached out to Mal’s Pals Foundation after struggling with the new diagnosis of seizure disorder for Levi. Angel was met with a quick response saying, “We can help let me get back to you!” Angel asked about resources for CPR classes. Angel and her husband, Lance have 3 other children and work to support their family. They both, luckily, have very supportive families and friends who wanted to help with the care of Levi. After the seizures started, his care alone, became much more complex. Angel wanted to get a group of potential caregivers or close relatives together to get certified in CPR. Mal’s Pals Foundation not only thought it was an amazing idea but looked into resources for funding for this project. CPR training can be pricey. Angel ended the story to me with such exuberance in her voice, Mal’s Pals Foundation funded the training! My entire family and some of our close friends are all certified in CPR and have the tools they would need to help Levi or any other person in need of help.
Mal’s Pals Foundation helped eliminate a financial burden which could someday, save a life. We are, and I know Levi’s family, is eternally grateful.
-Anonymous Submission entitled “An RTS Mumma”