Bentley's Journey

Our son, Bentley was born in June 2015 after a few months we quickly knew something was wrong, he didn't make eye contact and could not hold up his head. We started looking for answers, doctors thought he may have spina bifida or had a stroke at birth. All tests came back negative until finally his paediatrician did genetic testing. At 8 months old, Bentley was diagnosed with MECP2 Duplication Syndrome, a rare, progressive neurological disorder that primarily affects boys. Most people with this condition have low muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, delayed development of motor skills such as sitting and walking. Some individuals experience the loss of previously acquired skills (developmental regression). Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death, with almost half succumbing by age 25. The life we imagined for our sweet little boy was gone. We were devastated.

Now almost 2 years old, Bentley contends with the challenges of the syndrome everyday - He can not walk unassisted, he displays signs of autism, has feeding issues and does not talk. But in spite of these challenges Bentley is a very happy boy. His smile and laugh could light up a room.

THERE IS HOPE - Researchers have identified that the syndrome is reversible and are now developing a treatment, it is anticipated to be 2 years away from finding a cure.

All donations will go to the MECP2 Duplication Fund , to help find a cure for MECP2 Duplication Syndrome.