Only on 6: Toddler doing well one year after bone marrow transplant for rare disease

    baby jensen.jpg

    Do you remember this smiling face? This is baby Jensen Kittle of Columbia County.

    About a year ago, CBS 6’s Anne McCloy told you about Jensen's rare disease and his family's fight to get him a potentially life-saving procedure.

    Tonight we have an update everyone should see.

    The little boy we've always called baby Jensen, is now a happy and healthy toddler.

    “He's doing amazing actually.”

    Hard to believe when we met Jensen this time last year his future was uncertain. At just four months old, Jensen's family was in a fight to get him a bone marrow transplant for a rare disease called Severe Combined Immunodeficiency or SCID, which essentially left their happy baby without the ability to fight off illness.

    Last year the family's insurance company denied the family coverage for the procedure at Boston Children's Hospital, which specializes in SCID, because it was out of network, but after we looked into Jensen's case and featured his story the company had a change of heart.

    Jody Kittle is Jensen’s dad.

    “We kind of hit them with three or punches at one time. Certainly it was very beneficial to our case,” Kittle said.

    Jensen's older sister Alley, who was just 2-and-a-half at the time, served as Jensen's bone marrow donor. Jensen was released from the hospital almost a year ago today, on March 9th, and we followed his story all the way.

    “It brings tears to your eyes when you think about what she did for him,” Kittle said.

    Now Jensen is 17 months old. His dad tells us he's completely medication free and that the transplant is producing the infection fighting blood cells Jensen so desperately needed.

    “They are encouraging us to get vaccinations now which means they think his immune system is to that level,” Kittle said.

    One year later, Jensen's parents Jody and Rebecca are reflecting on their journey, how they fought to get their son the best care possible, and won.

    “It’s an amazing relief it did happen the way it did,” Kittle said.

    In addition to reaching out to CBS 6 Investigates for help with their case, Jensen's family also filed a complaint with the NYS Department of Health to get their son his bone marrow transplant with the doctors of their choice, and Jensen’s dad tells us Boston Children’s Hospital also contacted the insurance company to help them.

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