A family is navigating immense grief as they come to terms with the likelihood that their 5-year-old will not reach adulthood due to a rare and debilitating illness.
Alisha Morris of Devon, UK, experienced pure joy at the birth of her daughter, Esmay Ford. However, the family’s life took a dramatic turn in the subsequent years.
Currently, their primary focus is providing Esmay with the best quality of life possible.
Concerns about Esmay’s health emerged in 2021 when she was just two and a half.
After consulting with healthcare professionals, Alisha was informed that blood tests indicated Esmay had an autoimmune disease along with an overactive thyroid.
Further testing provided a clearer diagnosis: Sanfilippo Syndrome (MPS IIIA).
Sanfilippo Syndrome is a rare genetic condition that leads to ‘childhood dementia,’ characterized by mental decline, memory loss, and changes in personality. Esmay’s life expectancy ranges from 10 to 18 years, with her condition expected to decline over time.
Esmay’s grandmother has expressed her concerns regarding the noticeable personality changes and health challenges Esmay has faced.
As a young child, Esmay enjoyed speaking, playing in the park, dancing, and socializing.
But changes became evident when she was two and a half years old.
Esmay’s grandmother, Sabrina Peake, recounted: “We noticed she didn’t enjoy activities she used to, like going down the slide at the park and dancing to music.”
“She frequently caught illnesses, being sick for extended periods, and we knew something was amiss.”
“When her hair began to fall out, we took her to Exeter Hospital A&E and had to strongly advocate for clarity.”
Sabrina shared insights into the challenges Esmay faces and how the family is coping.
The most heartbreaking aspect is Sabrina’s belief that Esmay may not recognize her family anymore.
Sabrina stated: “We realized something was wrong when she stopped talking, and her hair began falling out in large clumps.”
“Esmay is mostly in her own world and doesn’t understand much about her condition, but it has been incredibly hard for us.”
“She can barely walk or talk, lacks awareness, and doesn’t interact with others.”
“I don’t think she always knows who we are.”
“Right now, she is at her healthiest, but she will continue to deteriorate until her body can no longer cope.”
Esmay’s family is raising funds for equipment necessary as her condition worsens, as well as creating cherished memories during this time.
They have launched a GoFundMe page to help finance specialized equipment and future outings.