Gia & Actor Jonathan Groff’s Campaign for KIF1A
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Gia Grace Capello and her family have teamed up with Movie, TV and Broadway star Jonathan Groff (voice of Kristoff from Frozen) to help raise awareness of "KIF1A Associated Neurological Disorder" (KAND), as well as provide support for Gia and fund ongoing medical research efforts. To show appreciation for your support, there are 2 opportunities to win a pair of tickets to a performance of the upcoming revival of “Little Shop of Horrors ” and a backstage tour with Jonathan after the show. Please continue reading to learn more about Gia's journey as well as contest details for the musical and backstage tour with Jonathan. Click here to see a short video of Jonathan talking more about this critical campaign.
Gia was born February 5, 2019, in Scottsdale, Arizona; she is the little sister of Juliana (7) and Joseph (2). Gia was a full-term baby and there was nothing abnormal during her mother's pregnancy. However, within the first few moments of her life, the doctors, nurses and Gia’s parents immediately knew something wasn’t right. Gia was admitted to the NICU shortly after birth and began to undergo a litany of medical testing and procedures. With no real answers, doctors labeled Gia under the broader diagnosis “hypotonia” (low muscle tone) and “hypoxemia" (low oxygen). The NICU medical director decided it was best that Gia get further evaluation at the local children’s hospital, where nationally recognized Pediatric Neurologists and Geneticists could follow her more closely. One week following her birth, she was transferred via ambulance to Phoenix Children’s Hospital.
Gia’s exceedingly “low tone” caused an onslaught of additional health issues and risks. Her poor suck and inability to properly swallow caused her to be at high risk of aspiration, and therefore a nasal gastric tube was inserted to administer her feedings. Since birth, she lacked reflexes in her upper and lower extremities. Her hands were tightly clenched in little fists and she lacked control over the movement of her feet. In fact, the day she was born one of her feet was bent completely backward and the top of her foot was laying perfectly flat against her shin. In addition to the physical appearance of her hands and feet, an electromyography (EMG) revealed she had severe abnormalities to motor and sensory in her upper and lower extremities, or medically referred to as “peripheral neuropathy.” It was following the EMG test that the Neurologists explained to Gia’s parents that she would never be able to utilize her arms and legs. Gia’s little hands and feet were placed into splints to prevent further contractures and complications. Fast forward three months after birth and countless visits to Phoenix Children’s Hospital and Gia’s parents were no closer to obtaining a diagnosis. Further testing did however reveal additional medical issues, including vocal cord paralysis which explained why Gia's parents never heard their baby cry.
It wasn’t until April 2019 that the results of Gia’s genetic testing came back; she was diagnosed with a progressive illness called KIF1A Associated Neurological Disorder (KAND); visit www.kif1a.org to discover more. KAND is an extremely rare neuro-degenerative disorder with a progressive course. It was first diagnosed in 2011 and there are only approximately 200 known cases worldwide. Tragically, there is currently no cure and no treatment. KAND is caused by severe mutations in the KIF1A gene which in turn cause a vital motor protein to break down. There is a wide range of symptoms and severity that begin to appear in children at birth. The condition affects both the brain and body, causing impairment and breakdown in the eyes, muscles and nerves, including optic nerve atrophy, cortical vision impairment, epilepsy, peripheral neuropathy, spastic paraplegia, hypotonia, ataxia, intellectual disability, cerebellar atrophy, and autism.
Because KAND presents with a wide variety of conditions in each person, it is extremely difficult for the medical community to diagnose the disorder without whole exome sequencing, which is a genomic technique for sequencing all of the protein-coding region of genes in a genome. Due to the hurdles and complexities of health insurance coverage throughout the world, accessibility to this form of testing is problematic. Consequently, many children can go years without knowing what is wrong with them and many are mis-diagnosed. KAND can only be diagnosed through genetic testing.
Gia has an extremely aggressive KIF1A gene mutation and tragically has a particularly short life expectancy. There are only three other known babies in the world with Gia’s same gene mutation sequence; one sadly passed away before turning one year old and the other two are both under three years old and are dealing with significant health risks. As you can imagine, Gia has spent much of her life thus far in and out of the hospital and requires extensive out-patient care with numerous specialists and round-the-clock support in the home. Her developmental functions are severely delayed, and she may never achieve the most basic milestones like holding her own head upright, sitting up on her own, or even crawling. The extent of Gia's specialized care has placed undue stress and an extreme financial burden on her family; Gia’s mother was unable to return to work due to Gia's needs, and the closest relatives who could help with Gia live over 2,000 miles away.
Gia and her family are partnering with Broadway star, actor, and family friend Jonathan Groff to launch this Go Fund Me campaign to help raise awareness of KAND, support Gia and her family, and fund ongoing medical research efforts. In addition to any donations for these causes, Gia and her family are seeking your assistance to help build better awareness of this devastating disorder by forwarding Gia’s story on to as many people as possible. A cure is a long way off, but our goal is to get the word out to as many people as possible so that other children like Gia can get diagnosed sooner and get the treatment they so desperately need.
Movie/TV star, two-time Tony nominee and Grammy winner Jonathan Groff will be starring in the Off Broadway musical “Little Shop of Horrors ” beginning this September. Jonathan has so kindly offered to help raise awareness and money for Gia and the KIF1A Foundation by offering two sets of (2) tickets to a performance of “Little Shop of Horrors” and a backstage tour with him after the show. There are two opportunities for people to win this experience with Jonathan:
1. The highest overall donor will automatically win a pair of tickets and a backstage tour with Jonathan Groff;
2. Every other person who donates will be entered in a random drawing for a chance to win a pair of tickets and a backstage tour with Jonathan Groff.
Winners will be selected on Saturday, September 28, 2019, and then notified within a few days via the email address provided on this Go Fund Me page during the donation submission. At that time, winners will be able to choose show dates between October 1, 2019 and October 30, 2019, or between November 20, 2019 and November 24, 2019. Donations will continue to be accepted beyond the September 26th contest deadline, but to be eligible for the musical tickets and backstage tour, your donation(s) must be received by 11:59 PST on September 28, 2019. Tickets will be placed in the winners’ name at the theaters will call booth. A family representative will coordinate all ticket and backstage tour logistics with each winner.
Jonathan, Gia, and her entire family hope you will consider donating to this worthy cause and help build awareness of KAND. Because there is no cure for this disorder, Gia's family knows the ultimate prognosis. Your donations will truly assist Gia's ongoing care and will provide opportunities for her family to spend as much time with her as possible by lessening the stress and financial burdens the family has endured.
If you would like to learn more about KAND please visit www.kif1a.org or check out their Facebook page here. You can also click here to learn more about Gia by checking out her Facebook page. Gia's family would like to give a special thank you to all the doctors, specialists and nurses they have encountered thus far in their journey.
Thank you, and God bless!
Gia was born February 5, 2019, in Scottsdale, Arizona; she is the little sister of Juliana (7) and Joseph (2). Gia was a full-term baby and there was nothing abnormal during her mother's pregnancy. However, within the first few moments of her life, the doctors, nurses and Gia’s parents immediately knew something wasn’t right. Gia was admitted to the NICU shortly after birth and began to undergo a litany of medical testing and procedures. With no real answers, doctors labeled Gia under the broader diagnosis “hypotonia” (low muscle tone) and “hypoxemia" (low oxygen). The NICU medical director decided it was best that Gia get further evaluation at the local children’s hospital, where nationally recognized Pediatric Neurologists and Geneticists could follow her more closely. One week following her birth, she was transferred via ambulance to Phoenix Children’s Hospital.
Gia’s exceedingly “low tone” caused an onslaught of additional health issues and risks. Her poor suck and inability to properly swallow caused her to be at high risk of aspiration, and therefore a nasal gastric tube was inserted to administer her feedings. Since birth, she lacked reflexes in her upper and lower extremities. Her hands were tightly clenched in little fists and she lacked control over the movement of her feet. In fact, the day she was born one of her feet was bent completely backward and the top of her foot was laying perfectly flat against her shin. In addition to the physical appearance of her hands and feet, an electromyography (EMG) revealed she had severe abnormalities to motor and sensory in her upper and lower extremities, or medically referred to as “peripheral neuropathy.” It was following the EMG test that the Neurologists explained to Gia’s parents that she would never be able to utilize her arms and legs. Gia’s little hands and feet were placed into splints to prevent further contractures and complications. Fast forward three months after birth and countless visits to Phoenix Children’s Hospital and Gia’s parents were no closer to obtaining a diagnosis. Further testing did however reveal additional medical issues, including vocal cord paralysis which explained why Gia's parents never heard their baby cry.
It wasn’t until April 2019 that the results of Gia’s genetic testing came back; she was diagnosed with a progressive illness called KIF1A Associated Neurological Disorder (KAND); visit www.kif1a.org to discover more. KAND is an extremely rare neuro-degenerative disorder with a progressive course. It was first diagnosed in 2011 and there are only approximately 200 known cases worldwide. Tragically, there is currently no cure and no treatment. KAND is caused by severe mutations in the KIF1A gene which in turn cause a vital motor protein to break down. There is a wide range of symptoms and severity that begin to appear in children at birth. The condition affects both the brain and body, causing impairment and breakdown in the eyes, muscles and nerves, including optic nerve atrophy, cortical vision impairment, epilepsy, peripheral neuropathy, spastic paraplegia, hypotonia, ataxia, intellectual disability, cerebellar atrophy, and autism.
Because KAND presents with a wide variety of conditions in each person, it is extremely difficult for the medical community to diagnose the disorder without whole exome sequencing, which is a genomic technique for sequencing all of the protein-coding region of genes in a genome. Due to the hurdles and complexities of health insurance coverage throughout the world, accessibility to this form of testing is problematic. Consequently, many children can go years without knowing what is wrong with them and many are mis-diagnosed. KAND can only be diagnosed through genetic testing.
Gia has an extremely aggressive KIF1A gene mutation and tragically has a particularly short life expectancy. There are only three other known babies in the world with Gia’s same gene mutation sequence; one sadly passed away before turning one year old and the other two are both under three years old and are dealing with significant health risks. As you can imagine, Gia has spent much of her life thus far in and out of the hospital and requires extensive out-patient care with numerous specialists and round-the-clock support in the home. Her developmental functions are severely delayed, and she may never achieve the most basic milestones like holding her own head upright, sitting up on her own, or even crawling. The extent of Gia's specialized care has placed undue stress and an extreme financial burden on her family; Gia’s mother was unable to return to work due to Gia's needs, and the closest relatives who could help with Gia live over 2,000 miles away.
Gia and her family are partnering with Broadway star, actor, and family friend Jonathan Groff to launch this Go Fund Me campaign to help raise awareness of KAND, support Gia and her family, and fund ongoing medical research efforts. In addition to any donations for these causes, Gia and her family are seeking your assistance to help build better awareness of this devastating disorder by forwarding Gia’s story on to as many people as possible. A cure is a long way off, but our goal is to get the word out to as many people as possible so that other children like Gia can get diagnosed sooner and get the treatment they so desperately need.
Movie/TV star, two-time Tony nominee and Grammy winner Jonathan Groff will be starring in the Off Broadway musical “Little Shop of Horrors ” beginning this September. Jonathan has so kindly offered to help raise awareness and money for Gia and the KIF1A Foundation by offering two sets of (2) tickets to a performance of “Little Shop of Horrors” and a backstage tour with him after the show. There are two opportunities for people to win this experience with Jonathan:
1. The highest overall donor will automatically win a pair of tickets and a backstage tour with Jonathan Groff;
2. Every other person who donates will be entered in a random drawing for a chance to win a pair of tickets and a backstage tour with Jonathan Groff.
Winners will be selected on Saturday, September 28, 2019, and then notified within a few days via the email address provided on this Go Fund Me page during the donation submission. At that time, winners will be able to choose show dates between October 1, 2019 and October 30, 2019, or between November 20, 2019 and November 24, 2019. Donations will continue to be accepted beyond the September 26th contest deadline, but to be eligible for the musical tickets and backstage tour, your donation(s) must be received by 11:59 PST on September 28, 2019. Tickets will be placed in the winners’ name at the theaters will call booth. A family representative will coordinate all ticket and backstage tour logistics with each winner.
Jonathan, Gia, and her entire family hope you will consider donating to this worthy cause and help build awareness of KAND. Because there is no cure for this disorder, Gia's family knows the ultimate prognosis. Your donations will truly assist Gia's ongoing care and will provide opportunities for her family to spend as much time with her as possible by lessening the stress and financial burdens the family has endured.
If you would like to learn more about KAND please visit www.kif1a.org or check out their Facebook page here. You can also click here to learn more about Gia by checking out her Facebook page. Gia's family would like to give a special thank you to all the doctors, specialists and nurses they have encountered thus far in their journey.
Thank you, and God bless!
Fundraising team: Team Gia Grace (3)
Gwen Callahan
Organizer
Mount Joy, PA
Jeremy Capello
Beneficiary
Laura Ditrapano
Team member
