Support and Giveaway Applications
DIRECT TO FAMILY SUPPORT
Mal’s Pals Foundation has been lucky enough to receive donations over the last four years through our fundraisers, raffles or just miscellaneous submissions from people trying to support our mission and cause. We would be crazy not to take a moment to thank the community we are based in, Dorchester, Massachusetts. We would not be as successful, or have been able to provide these supports without you. Thank you to the Dorchester community and the greater Boston area for giving us our legs and continuously showing up for Mal and all her pals.
As a board, we had a vision of using this money to build an enormous and epic Medical Networking Conference. We wanted to rent out a convention center, have a weekend full of events where people could meet each other, talk to each other, learn from doctors, social workers, adaptive sporting programs, camps… you name it, we were looking into building it. In March 2020, and the (almost) two years after that, we had to redirect our big goal vision. We had already been donating smaller sums of money to inclusive events like providing transportation to local school field trips, adaptive bowling days, swim lessons at a local Boys and Girls club. So for us, when we had a virtual board meeting and discussed using more money to support families directly, it was a no brainer. We wanted to publish some of the stories we have been permitted to share. This is only the beginning of an amazing journey forward. While reading these testaments to our foundation, please consider SHARING us on social media, talking about Mal’s Pals Foundation, visiting our website often, and donating when you can. Thank you to all of our supporters and to those who shared their experiences below.
Miles
Miles will be 9 years old in June and goes to school at The Campus School at Boston College. Miles loves Mickey Mouse, Buzz Lightyear, the Wiggles, Dr. Seuss, and The Little Blue Truck! Miles enjoys listening to music and watching his younger brother and sisters dance and be silly. Miles and his smiling eyes are the light of his family’s world. The regressions of the past two years have been devastating for Miles- he currently relies on a team of incredible teachers, therapists, and doctors to thrive, having lost all of his independent skills. Miles teaches us every day that we have so much to be grateful for. What makes Miles unique is that he is one of only 2,600 people world-wide diagnosed with Phelan-McDermid Syndrome (PMS). PMS is a rare genetic syndrome characterized by genetic disruption (deletion or mutation) at 22q13, which is an important gene in neuronal development. Most PMS kids have a deletion that involves the gene SHANK3 and other surrounding genes. Other kids have a rearranged chromosomes called ring chromosomes that also disrupt SHANK3. Miles, however has a specific mutation in SHANK3 that causes the mutated copy to not make functional protein – a nonsense mutation that has profound and devastating effects on his global development and puts him among the most rare of the all individuals in the world currently with the diagnosis. Like many of his peers, Miles also has seizures, fevers, sleep disturbances, asthma, allergies, immunological impairments, and profound cognitive impairments. Miles is currently nonverbal and receives speech, occupational, physical, behavioral, swim and feeding therapy.
I recently posted on social media that we were looking for recommendations for adaptive bike materials, I.E. straps for foot pedals. In the comments, I must have got into details about fundraising for an adaptive bike for Miles. Within a day or so, Mal’s Pals Foundation reached out to me. They said they were getting ready to implement a program where a person would be gifted a custom Rifton bicycle or tricycle and that Miles would be the perfect candidate to start interest in the program. After some measurements and logistics, we have an adaptive Tricycle for Miles, before his 9th birthday, and we did not have to raise a dime. Mal’s Pals Foundation is just beginning their remarkable work for individuals of all abilities and we are so grateful to them for giving Miles a chance to ride bikes with his siblings, peers, family members, and just find joy in a piece of equipment that is fitted to him, personally.
Wyatt
Wyatt has a rare genetic disorder called Rubinstein-Taybi syndrome, his is caused by a mutation on the CREEBP gene. Rubinstein-Taybi Syndrome is a condition characterized by short stature, moderate to severe intellectual disability, distinctive facial features, medical issues, broad thumbs, and broad toes.
Wyatt was failure to thrive until about eighteen months old. Wyatt has had his fair share of medical complexities. He had the emergency adenoidectomy when he was one year old, before his RTS diagnosis. We had actually arrived for a different surgery that morning, but our second opinion ENT found that his adenoids were completely blocking his airways, we weren’t even sure how he was breathing effectively. During the emergency adenoidectomy his vital signs were way off and the medical staff suspected malignant hypothermia. We found out later that anesthesia allergies and sensitivities are common with people who have the diagnosis of RTS. We are very lucky. Malignant Hypothermia can be deadly, and we are very aware now, and advocate for Wyatt when he has to be sedated. Wyatt had multiple surgeries after that including a ranula removal, stomach surgery to remove an obstruction, dental surgery, and a tethered cord release. He has had other health concerns he struggled with such as reflux, constipation, torticollis, hydrocele, innocent heart murmur, and low iron levels, but he’s resolved most of those issues with age. Hypotonia, or low-tone, is something he still and likely, will always, struggle with. I’ve lost count on the number of appointments and procedures he has endured. Our list of specialists is profound.
Wyatt has significant developmental delays. He’s had speech, occupational, and physical therapies on and off from the time he was six months old, we added ABA therapy a couple of years ago. He has made big strides, he’s achieved some important milestones, but is still currently a non-verbal five year old. We tried to get an AAC device through school to give him a voice after years of practice using PECS, but we were denied. Mal’s Pals Foundation stepped in, and is making that dream come true, giving my son a voice. They have paid for and shipped a device, full with a communication application and safety case to us. They have offered support in how to gain access to using it. We now know through our brief interactions that this nonprofit is just a group of parents and their friends who want to help people. They raise money and they try to deliver small miracles like this one, while offering to call or text or video chat to help us get by. We are forever grateful for their kindness and generosity in providing my son with this life changing equipment. Matthew
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 Rubenstein-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.
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. Matthew was first diagnosed with Follicular Non-Hodgkin’s Lymphoma in February 2012. People with RTS are prone to some types of Cancers. You would have never known anything was wrong because Matthew never complained.
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, stay in the hotel the night or and after this treatment because he felt so bad. We did this for 2 years. After 2 years of this medication, Matthew had a normal PET scan. On Jan 23, 2019, Matthew started doubling over in pain during this 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 was be admitted to the hospital for four days (22 hours a day) of chemo, then 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 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. Again 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 he trusted me with Matthew for 41 years. My heart is still broken. My sweet baby is gone but Mal’s Pals helped me so much with the burden of debt from years of travel related to his medical care. He he is smiling now upon us all.
Mallory and Matthew shared a special bond. This loss was felt by the Bickerton Family as well as all those who attended and participated in the Northeast RTS Reunions annually in Baltimore, MD. We love and miss Matthew, and you will never be forgotten.
Anonymous
I would like to take the time to Thank Mal’s Pals for working closely with the Boston Police Department. Mal’s Pals went above and beyond for a young single mom struggling during the Holiday season. Jessica and her daughters were beyond grateful to Mal’s Pals for donating an education tablet as well as the device needed to support Jessica’s disabled daughter’s ability to learn. Mal’s Pals also went above and beyond for Jessica’s other daughter, while purchasing her and mom a gift card to spend on whatever they wanted. I can’t thank them enough as they did this without hesitation. When in doubt, this city rises to the occasion because of non profits like, Mal’s Pals Foundation.