Celebrant Pam Meily Vetter


	Celebrating Life Everyone Has A Story...

Expecting twins, Gail and Andrew Katon were very excited about having twin boys. They named the boys in utero. Baby A was named John after Andrew's grandfather. Baby B was named Frank after Gail's father. It was a normal pregnancy as the couple prepared for the birth of their babies.

Arriving prematurely, Frank Connor Katon was born with his twin John Henry Katon in March 2008. Frank was known as Frankie, while John was known as Jack. Frankie was a mini-me of Gail, while Jack was a mini-me of Andrew. Frankie weighed three pounds, eight ounces, and was 16 1/2 inches long. Both of the boys spent their first three months in the Neo-Natal Intensive Care Unit at Cedar Sinai Hospital in Los Angeles. When the boys were finally put together head to head, Frankie had a big smile on his face. The boys always had a special twin connection. Frankie went home first, two weeks ahead of Jack. When the boys were four months old, the family welcomed nanny, Mariela, into their lives and she was a fantastic second mommy.

The boys got into a regular routine and slept through the night. During the day, they loved it when people would hold them, sing or read books. Frankie's favorite characters were Thomas the Train, Elmo and Cookie Monster. The boys loved listening to children's music. Frankie liked "Row, Row, Row Your Boat" and "You are My Sunshine." Jack and Frankie went on many stroller rides throughout the neighborhood. The boys preferred the side-by-side stroller as their arms often intertwined naturally. When the boys' car seats were finally turned so they were facing forward, Frankie talked the whole time, enjoying the new view. Their parents took photos and videos throughout the months as they grew. Every night Gail and Andrew kissed the boys and said, "I love you."

In September 2009, the boys were given a terminal diagnosis due to a rare neurological condition called PCH2. It was devastating news. But, a parent's instinct is to help them survive. Gail and Andrew leaned on each other. They made a conscious decision as they were determined to do what was best for their children by giving them a quality life of love and care. As a couple, they were a strong team and this experience made them closer as they became parental advocates and part-time doctors. They got a fast education and researched everything so they could to find hope for the next step.

Through it all, Frankie had a memorable smile and laugh. It was as though he would see pink elephants, he was so happy sometimes. There were little milestones along the way. The boys grew and gained weight. They had little tastes of pureed food and Frankie loved the taste of chocolate pudding. When Frankie got mad, he'd say "mum." When the boys got upset, their twin connection helped and they comforted one another. As they were put together side-by-side, they'd calm down. The boys loved Penny and Brick, the family's Great Danes. In fact, the dogs were very protective of the babies. Penny was like a bouncer at the door, while Brick would sniff the babies every day to make sure they were okay. Frankie especially enjoyed watching the dogs and they made him laugh.

In May 2009, the family traveled to Toronto, Ontario, for specialized physical therapy in pediatric neurology from Ramon Cuevas of Santiago, Chile. The family watched a video of a girl with a less severe type of cerebellar disorder, who is now 13, running and jumping. Finally, they had hope. The boys were 14-months-old at the time and the week long therapy, twice a day, seemed to help. It was aggressive therapy for PCH2 and focused on stimulating the necessary muscles for certain activities. It was emotional, because Gail and Andrew saw the boys do things they never thought they'd do, as they would actually sit up and stand. Back home, the boys continued with their occupational therapy and physical therapy every week. Dana, an LVN, joined the family as third mommy when the boys were 15-months-old. Dana adored the boys as much as Mariela.

Gail and Andrew became true advocates for their sons. In fact, they learned to challenge the doctors as they had to develop their own advocacy at the hospital. One of the doctors even told them, "You'd make terrible nurses." When Andrew asked "Why?" The doctor said, "Because you ask too many questions." Andrew and Gail became very familiar with the various medications, procedures, equipment, therapies, nurses, Long Beach Memorial, and everything else that goes along with having terminally ill children. While the boys couldn't escape mortality, these parents hoped for an improved quality of life for their boys. They hoped that their boys would some day be able to walk.

Over the last three months, the boys started to pay more attention to each other. They'd even reach at each other in recognition of their twin. Frankie watched his parents with his eyes as they crossed the room and he'd smile and laugh. The boys both paid attention, observed and they were engaged in activity with interested eyes. In October 2009, when Frankie was in the hospital, they laid Jack next to him and they both lit up. They missed each other. Gail and Andrew decided to manage things at home as best as they could and make the most out of every day. In November, the family took the boys to Disneyland. Gail said it was on Frankie's bucket list. Frankie liked Small World and he smiled at Dumbo. Both of the boys got Disney ears decorated with their names. Frankie's color was always blue, while Jack's color was red. As holidays were celebrated, Frankie liked seeing the Christmas lights and hearing the music. Like all children, he enjoyed being bounced on his parents' knees, turned upside down, and he loved kisses on his belly and neck. When Frankie was in the NICU, he was nicknamed piglet because he was so noisy. But, as he grew, he became known as Frankfurter, "Our little hotdog." For New Years, Gail and Andrew went to a friend's home, while the boys partied with Dana at home.

Frankie had been with Hospice for the last month, but his spirit and mood were very strong. It wasn't quality life, but he never knew he was sick. He was never told Hospice was there. One night, he laughed so hard he turned bright red. The family's friend, Michelle, was there, and they all joined in the laughter. Then, two days before he passed, he was lethargic. By Friday, he seemed better and opened his eyes, smiled, and laughed. By Saturday afternoon, he was sleeping more again. Gail and Andrew dreaded the difficult decisions that they would be faced with in regards to Jack and Frank. They had always hoped that their boys would make the decisions easy for them. Finally, Frankie gave his parents the signal that he had enough. When Gail was trying to suction him, he cried out like he never had before. Frankie was a resilient boy and rarely complained about anything. But, this time, he cried out, as though to say enough. Andrew and Gail agreed, Frankie had been through enough.

A calm Frankie passed away peacefully in his mother's arms, while his father was sitting next to them. Frankie was surrounded by both his family and friends who loved him so very much. He looked like he was asleep and his parents were able to take all of the lines off him. Finally, he was free, playing and talking like a two-year-old should with his grandparents who went before him. Frankie was laid to rest with pictures of Jack and his mommy and daddy. He was wearing his Hawaiian shirt, jeans, a denim jacket with a hood, and new white tennis shoes his daddy bought him for Christmas. His urn displays his name Frank Connor Katon, and his nickname, "Our little Frankfurter."

Frankie will be remembered as the little boy with tight ringlets, blonde hair with such a special color it should have bottled because it was so perfect. He had such long eyelashes and his eyes smiled when he looked at you. He knew he was loved and he loved being held in somebody's arms. He was happy. His legacy will be to live and love every day. Frankie's purpose was to put a smile on other faces, to teach us not to take our children for granted, and to live each day to the fullest because we may not have a tomorrow. His story also reminds us to get involved in patient advocacy. His parents will miss holding him, waking up and seeing him in the morning. They'll miss his laugh and smile. They believe every life has an energy, a soul, or consciousness and when you die, that soul goes back from whence it came and is part of every consciousness that came before it. Gail and Andrew know they will be reunited one day with Frankie's energy. For now, he has a new life of freedom.

Frankie was preceded in death by his grandparents Pat, Frank and Diane. He is loved and remembered by his parents Gail and Andrew; brother John "Jack"; grandfather John and his wife Belinda; nannies Mariela and Dana; extended family and many family friends.

The family would like to thank everyone who has played a role in Frankie's life saying, "We could not have done it without everyone who cared."

Memorial donations may be made to the Katon Family Foundation for PCH2, the Caring Bridge Website, and NORD, the National Organization of Rare Disorders.