Anissa Merriam

Anissa Merriam

Anissa Merriam was a vibrant teenager, a talented artist who loved anime and excelled in honors classes. But at 14, she started dropping her pencil and her hairbrush, and struggled with her studies. Something wasn’t right, she told her parents.

Eventually, Anissa was diagnosed with a rare, neurodegenerative form of epilepsy that strikes in early adolescence, causing intractable seizures and childhood dementia. Most patients die before 30. Today, Anissa, at 23, likes to dress up like 1930s child star Shirley Temple, watch Disney movies and tap dance.

Anissa suffers from daily seizures and childhood dementia. She has a g-tube placed in her stomach to use for all her medications and she experiences ongoing cognitive decline along with swallowing issues.

At the age of 23, Anissa receives full-time care at home from her family and nurses. One of the most heartbreaking aspects of Lafora disease is that it robs seemingly healthy teens of their full potential.

Anissa is a talented artist and had several pieces of art selected for art shows during high school. In fact, she dreamed of studying art in college and using her talent as she reached adulthood. Anissa doesn’t draw any more telling her mom that she is unable to draw because her myoclonus, jerking motions, make it difficult to use her pencil and she has seizures while drawing due to Lafora. She often struggles just to write her name. Anissa also expresses her sadness about not having the experiences of driving, college life, and her independence like other young adults her age.

“This is a disease where we watch them go backward.”

Anissa’s doctors have informed her family that in time and without a treatment or a cure, she will lose her ability to walk and talk. Most children with Lafora do not survive past 10 years from the onset of symptoms.

Helping fund Anissa’s fight for treatment will slow the progression of the disease and give her time as she waits for a cure.

She has participated in a two-year natural history study to collect data on the progression of the disease at UT Southwestern Medical Center in Dallas. The information gathered has established biomarkers to help drive a clinical trial that was to begin in 2021.

Unfortunately, the clinical trial was delayed due to covid and other FDA requirements. The delay of this clinical trial was devastating to the family because Lafora progression never stops.

Recently, Anissa and her family were given hope again with a potential treatment that could help slow and possibly stop the progression while she waits for the clinical trial to begin, a biotechnology company with the promising treatment could help not only Anissa but other Lafora patients.

The only thing holding this process back right now is funding and since Lafora is ultra-rare, there is no funding to help to move their treatment forward to patients.

Your donation could make this treatment possible for Anissa and others who suffer from this horrific disease.

Time and slowing the progression are what Anissa an all Lafora children urgently need to make it to delayed clinical trials.

Please read this Washington Post article dated June 4, 2020 sharing Anissa’s Lafora story. It was written during covid when trials and research labs were shut down.

Washington post story

Donations can also be made on this website by clicking Donate, PayPal or by mail to Chelsea’s Hope, PO Box 348626, Sacramento CA 95834

Please note on behalf of #teamanissa

 

 

 

Gehad Breadiy

Gehad at 12

Mother, Azeza Kasham from Ann Arbor, Michigan is pleading for support in the fight against Lafora disease. Mother of three, has already lost her first-born son Haitham to this devastating disease at just 16 years old in 2019 and is now fighting for her second son Gehad, also diagnosed with Lafora disease who is only 12.

“Loosing one son to this disease is enough and now the heartache is harder to bear, going through it all again with Gehad.”  cried Azeza Kasham.

A cure didn’t come in time for Haitham, but there is hope for Gehad. Lafora disease is a single gene disorder. By replacing one gene you can cure the disease. Scientists have shown they can cure the deadly disease in the laboratory. Families like Azeza’s are desperate to bring these treatments out of the labs and into the children who need them.

Prior to this diagnosis, children like Haitham and Gehad were like most other teens in the USA, attending school full time with no signs or symptoms of any abnormalities. They were healthy and normal, had social relationships with family, friends, and peers.

Haitham deteriorated rapidly in a period of about three months where he lost his ability to walk or speak sentences before his passing.

“One day he just fell on the floor and had a seizure” said Azeza Kasham

Haitham Breadiy

In 2017, Azeza reached out to Chelsea’s Hope Lafora Children’s Research Fund for support when Haitham was diagnosed and again in 2019 with Gehad. Small donations and emotional support have been provided by our small organization to help care for Gehad but more is needed.

Azeza had to stop working full time to care for her family and her husband who is recently in remission from Hodgkin’s Lymphoma, so not only has it been hard emotionally, the family is not able to financially support themselves due to these illnesses.

Our goal is to raise awareness and much needed funding to continue our mission, research and turn them into therapies. Chelsea’s Hope has done so much in recent years and we are almost there….hope is closer than it ever has been before!

Mother, Azeza with Gehad

Khari McCrary

 

Khari at 18

Moniqueca Barfield from Gardendale, Alabama, is the mother of 18-year-old Khari McCrary. In 2015, at just 12 years old, Khari McCrary experienced her first seizure and was misdiagnosed with generalized epilepsy. Receiving the correct diagnosis when Khari was 14 years old, initially was very challenging as Lafora disease is commonly confused with epilepsy.

Khari is the first Lafora case known in Alabama at this time. In January of 2017, Khari’s seizures worsened, and she started having multiple seizures a day. In June of 2017, she was referred to a specialist who recommended a weeklong stay at Children’s Hospital of Alabama where she endured a week of testing on the epilepsy monitoring unit. It was then that she was diagnosed with the lifelong rare genetic disease called Lafora.

Khari at 14

Khari at 14

Lafora is a progressive, autosomal recessive neurodegenerative disorder characterized by intractable seizures, difficulty walking, muscle spasms, neurological deterioration, rapid cognitive decline, childhood dementia, and oftentimes death, typically within 10 years of onset.

Before Khari’s diagnosis, she had a normal teenage life. Like most teenagers, she was very active in sports. In the fourth grade, Khari tested as a gifted child with an IQ of 118. Now she has an IQ of less than 60. She went from being a straight “A”, independent student to having an escort to assist her to and from her classes.

Mother, Moniqueca Barfield states in her own words “Our world has been turned upside down. Khari depends on someone to be with her at all times which is very emotionally draining for a 15 year old.”

Khari McCrary

I’m a single mother, working, serving in the military, and caring for my two school-aged children.  I’m still able to work but I have to take a lot of time off due to Khari’s seizures and medical appointments. I have to ensure someone is present at my home to get her off the bus until I arrive home from work, and be with her at all times (bathroom, showering, etc.). On top of this, Khari has a younger sister who requires my time and attention as well. The financial burden is significant. I’m thankful I have an understanding boss and good healthcare coverage but even so, the constant trips to the emergency room and having to take time off for frequent doctor visits really takes its toll. I hope a cure can be found soon and that no child will have to go through what we’ve gone through. I wouldn’t wish this on anyone. My family lives every minute unsure when or where a seizure may occur. When Khari initially begin having seizures, she researched service dogs for her condition. At that time, I didn’t entertain the thought because I knew it would be another responsibility. However, once Khari’s condition worsened, I decided to apply for seizure alert service dog. Once we were approved, we faced another challenge of raising $10,000 of the $20,000 for a service dog through Service Dogs Alabama. After realizing how challenging it would be to achieve the goal within a timely manner, I decided to let the world into my usually private life and asked the community for help through an interview with WBRC. Khari has since received a wheelchair from Children’s Rehabilitation Services, and is due to receive her service dog in May. Now I’m faced with another challenge of not having a vehicle to accommodate our family and its special needs.”

Moniqueca has been a wonderful advocate for her daughter helping her since symptoms started. She created awareness to help get Khari a service dog back in 2018 to assist with alerting the family of Khari’s seizures, read the story here

Also just recently an update with Khari and her service dog Tallulah in August 2021, read the story here

Khari in 2019

Thomas Barter

Thomas Barter was diagnosed with Lafora disease in June 2018.

In April 2019, Make-A-Wish sent Thomas and his family to Hawaii.

Thomas Story