Avery’s Fund

CDKL5. A rare disease with no apparent cause, no cure, and a very clinical name.

Yet, for Middlesex County and its surrounding neighbors, this disease has a very personal and lovely face – Avery Rose Leopoldino of Westbrook.

Avery was diagnosed at two years old with this extremely rare disease. At the age of 6 weeks, she began experiencing frequent seizures and was originally diagnosed with epilepsy. Upon learning from doctors that Avery did not have epilepsy but a very rare genetic disease with no known cure, Avery’s parents, Mark and Kristin, had to take a long pause and start over at the beginning, researching the diagnosis and making many decisions.

Mark and Kristin partnered with the Community Foundation of Middlesex County, creating Avery’s Fund, a donor advised fund which supports the research into the cause and a cure for CDKL5. Bill’s Seafood in Westbrook took up the cause to bring attention to this disorder and to aid in raising money for the support of research. With the help of friends, a lemonade stand was erected outside the restaurant in 2010 and featured Avery’s photo. During the month of July, Pepsi donated the lemonade and proceeds from the sales were donated for CDKL5 research. Each summer the Avery’s Lemonade Stand can be found at Bill’s Seafood, supporting the efforts to raise awareness and research funding.

Since the launch of Avery’s Fund and the first Avery’s Lemonade Stand, friends, neighbors, community members, and businesses have supported Avery and CDKL5 research through can drives, telethons, penny drives, and individual gifts.

What is CDKL5?

CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. There are fewer than 200 cases worldwide, however, more and more children are being diagnosed as awareness of CDKL5 spreads.

Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.