Michael and Jamie Velasquez instinctively knew something wasn’t quite right with their daughter, Marissa. The pretty, brown-haired, green-eyed, princess-loving six-year old always had trouble gaining weight, and sometimes a little trouble walking. Then one year ago the seizures began. The seizures led to tests, three medically-induced comas and two hospitals searching for the cause of the seizures. The last thing Michael or Jamie expected anyone to say was, “It is time for hospice.”
Typically people think of end-of-life hospice care patients as seniors or the elderly. Yolo Hospice has cared for people of all ages. On her parents’ 10th wedding anniversary, September 7, 2012, Marissa became a Yolo Hospice patient.
[pullquote2 quotes=”true” align=”right” cite=”Jamie Velasquez, mother of Yolo Hospice patient”]Everyone we’ve come into contact with has been unbelievably caring and compassionate. Everyone at Yolo Hospice has been amazing.[/pullquote2]
“Everyone we’ve come into contact with has been unbelievably caring and compassionate,” said Jamie. “Everyone at Yolo Hospice has been amazing. Stephanie, our social worker, has helped us with getting Social Security for Marissa. Our nurse, Jan, comes out two or three times a week to monitor Marissa’s health.”
Their princess, Marissa, has a rare disease called Alpers. Michael and Jamie don’t want anyone else to go through this experience; they are very motivated to talk about Alpers and help educate others.
Alpers affects the mitochondria in the body. Healthy mitochondria convert calories and nutrients from food into energy. Mitochondrial diseases result when mitochondria fail to function properly. Since mitochondria are responsible for fueling nearly all of the body’s energy needs, there is a long list of possible symptoms depending on where the body is having the “energy crisis.” Alpers can effect Marissa’s sight, liver, and cause her to have debilitating and potentially deadly seizures, general weakness, involuntary jerking of muscles, intestinal difficulties, and problems with the heart muscle. There is no cure. Only the symptoms can be treated.
“The end of life is never easy, but it is beyond painful when a child has a life-limiting disease,” said Jan McMahon, RN. “Michael and Jamie have shown true bravery in the face of their heartbreak. Their main concern is Marissa’s comfort and keeping her as happy as possible.”
Marissa, and every Yolo Hospice patient, has a team available to help with care. Registered nurses visit to manage the patient’s health and physical comfort. Social workers enhance the lives of patients and their loved ones with emotional support and resource information. Spiritual care counselors are also available. Home health aides provide patients with personal care and homemaking basics. Volunteers give support and companionship. Bereavement services are also available for adults and children.
Marissa has a four-year old sister, Alexandra, who is as full of character and joy as her big sister.
“Marissa has been in a wheelchair now for a couple of weeks, but we’re trying to keep things as normal as possible for both girls,” said Michael. “I couldn’t ask for a better mother or wife than Jamie. She’s always been great; I know I’m so blessed to have her with me since this has happened with Marissa. If one of us is breaking down, the other steps up and takes control.”
[pullquote2 quotes=”true” align=”left” cite=”McMahon, Yolo Hospice Nurse”]Considering what they are going through, they have a very normal household and are handling this gracefully. When they need to cry, they cry. When they need to laugh, they laugh. Maintaining normalcy for Alex and Marissa is very important to them.[/pullquote2]
“Considering what they are going through, they have a very normal household and are handling this gracefully,” said McMahon. “When they need to cry, they cry. When they need to laugh, they laugh. Maintaining normalcy for Alex and Marissa is very important to them.”
On top of their heartbreak, Michael and Jamie are struggling with the financial challenges of Marissa’s treatment costs, including a year of hospitalizations and specialty visits. Michael’s job is ending this month when his employer’s business closes its doors. Michael will now care for Marissa as Jamie returns to work. They’ve held several fundraisers, and use their spare time to create and sell Princess Marissa Hair Bows.
Despite Marissa’s disease and its toll on her energy level, she’s very interested and engaged in things around her. She loves dancing in her wheelchair to Katy Perry. As a new Justin Bieber fan, she plays his songs repeatedly. “I was in the other room and heard someone singing the words for the song…’baby, baby, baby’,” said Jamie. “It wasn’t Marissa. It was Michael!”
Marissa is also planning her December 10th Cinderella-themed birthday party. She has been very clear about her plans. Marissa wants chicken enchiladas, vanilla and chocolate cake and, a piñata. Marissa’s parents, her Yolo Hospice care team, and all those around her are working tirelessly to create the best possible fairytale ending for this very sweet girl.