Nicolas and Byron Deliyannis

Miller-Dieker Syndrome (MDS)

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Nicolas and Byron Deliyannis's Bio

deliyannis-bebo-pg-pic Nicolas “Nico” Deliyannis is three years old with a rare genetic disorder called Miller-Dieker Syndrome (MDS). He cannot walk or talk and has severe seizures. Despite his condition, Nico is a happy kid who loves to charm with his good looks and charisma. He loves to sit in laps, look at himself in the mirror, bang on improvised drums, babble and hum his special songs, look at lights, and listen to music. Nico recently had feeding tube surgery because seizures are robbing him of the ability to eat. Nico has an identical twin, Byron, whose nickname is Bebo. Both boys have MDS.  Nico lives with his family in Frederick, Maryland. His family is struggling with medical bills as a result of the recent surgery, the new expenses of having to pay for feeding tube formula and supplies, and regular trips to Rockville, DC, and Annapolis for medical appointments with specialists. Nico needs a hospital bed. His family is also struggling to find the funds for a handicapped ramp so the boys’ wheelchairs can be used to send them to Rock Creek school and a handicap accessible vehicle for both boys and their wheelchairs.

Byron “Bebo” Deliyannis is three years old with a rare genetic disorder called Miller-Dieker Syndrome (MDS). He cannot walk or talk and has severe seizures. Despite his condition, Bebo is a loving and sensitive boy. deliyannis-nico-pg-picHe loves to sit in laps, hold hands, look into your eyes, get light kisses and tickles, hum his special songs, look at lights, and listen to music. Bebo recently had feeding tube surgery because seizures are robbing him of the ability to eat. Bebo has an identical twin, Nicolas whose nickname is Nico. Both boys have MDS. His family is struggling with medical bills as a resultof the recent surgery, the new expenses of having to pay for feeding tube formula and supplies, and regular trips to Rockville, DC, and Annapolis for medical appointments with specialists. Bebo needs a hospital bed. His family is also struggling to find the funds for a handicapped ramp so the boys’ wheelchairs can be used to send them to Rock Creek school, and a handicap accessible vehicle for both boys and their wheelchairs.

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