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Macon Chronicle-Herald - Macon, MO
  • Coming together

  • The Macon community really came together to help out Jacob Jr. Ellis, 8, of Macon. Find out how here.
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  • Jacob Jr. Ellis, 8, of Macon is smiling from ear to ear, telling jokes about his favorite Pokémon and just brightening the room with his happy spirit. His positive attitude makes it hard to believe he just had a double osteotomy on both of his hips—a surgery that had to take place because of Jacob Jr.'s rare genetic disorder.
    When Jacob Jr. was four years old he was diagnosed with a metabolic disorder, mucopolysaccharidoses, also known as MPS1. Because of this disease, Jacob Jr. has stiff joints, speech difficulties, has went through rigorous enzyme replacements, wears a port-a-catheter, wears a obstructed sleep apnea machine at night, makes trips to Columbia frequently for a variety of doctor's appointments, and of course had to have his double osteotomy.
    Prior to surgery, Jacob Jr. could walk, but only on his toes. That area of his foot is so calloused from use while his heels look smooth and unused.
    "They went in and cut his femurs in half," said Jacob's mom Robyn Ellis. "He has five screws on each side with titanium bars that hold them into place. "
    But this story isn't about Jacob Jr.'s double osteotomy. It's about the journey to this point. See Jacob Jr. isn't Robyn and Jacob Ellis' only son with MPS1. That's right, they have a son, Damion, 9, who also has MPS1 only with different symptoms.
    "Even though they both have it, Jacob Jr. is more severely affected," said Robyn. "We have insurance, but making trips to Columbia back and forth so often gets expensive. Plus, the insurance doesn't pay for the parents to eat. The cost really adds up."
    To get funds for trips to the doctor and food, Robyn ended up going door-to-door to both homes and businesses asking for donations.
    "We walked forever," said Robyn. "I think everybody was leery at first, but by the end of it, there were enough donations to really help. A few neighbors brought us dishes which was amazing too."
    Jacob Jr. has three to four weeks left of healing time and can't wait to walk again.
    "… Or to get this cast off," laughs Jacob Jr. while looking down at his decorated orange cast. "Except, I like my Pokémon."
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