Alison, 13, who has Moyamoya disease

Update…. Alison has just had an X-ray. Her bone density is too low and she has a fractured spine so her family now need to buy a wheelchair so she can continue to get around as walking is no longer possible.

Hi, my name is Abi and I am raising funds for Alison a girl who lives in Mexico. Alison has a rare progressive cerebrovascular disorder called moyamoya, and needs continual treatment to stop the progression of this cruel condition. Moyamoya causes the arteries in the brain to narrow which restricts blood flow to the brain and eventually leads to life changing symptoms including but not exclusive to strokes, brain hemorrhage, vision loss, cognitive impairment, seizures, severe headaches that cause vomiting, and the inability to speak or stand upright.

Alison was a little girl of just 8 years old when she was diagnosed with moyamoya after suffering a stroke; she is now unable to move her right arm and has intensive physiotherapy to enable her to walk. Alison lives with her Mum Rosy, her Dad Hilario and Ernest and Aiko, her two brothers. They live in a small house in Puerto Morelos, Mexico, and before this happened were a normal Mexican family. Now they must regularly travel 40km on public transport to the CRIT TELETON, Child Rehab and Inclusion Centre, in Cancun for Alison to have treatment, and also to a private clinic for angiograms to monitor the health of Alison’s blood vessels. Hilario works three jobs and long hours to try and earn enough money for Alison’s treatment. One of his jobs is the boat captain for an organisation called GVI. Staff at GVI in Mexico train volunteers in scuba diving and research methods, increasing their awareness of the threats faced by coral reefs and other ecosystems. These volunteers, who come from around the world, then participate in scientific research and data gathering for local and worldwide marine conservation projects. Hilario is a much loved member of the team there and does a great job at keeping the volunteers safe at sea. Having him as captain also ensures that the dives to gather data can take place safely. When Alison has an appointment Hilario must miss work to take her on the 2 hour round trip, with the appointments themselves also taking considerable amounts of time. Currently, the family are not able to afford the optimum number of therapy appointments which Alison needs to regain the use of her arm which must be heartbreaking.

Challenge

There is no cure for moyamoya disease. At least one carotid artery and sometimes both will narrow or close. Other cerebral arteries can also be blocked which means that blood and oxygen supplies to the front two thirds of the brain are disrupted. New blood vessels form but these are too small, and eventually stop working. In the long term, surgery to create a healthy new supply of blood for the brain is the only viable option. Without surgery the condition could deteriorate, particularly in children. Medication is used to manage symptoms by thinning blood and opening blood vessels, but the condition is progressive and these symptoms worsen the more the arteries are constricted. The quality of life for people with moyamoya can be affected in many ways, e.g. weakness or paralysis to one side of the body, but more severely, death from a stroke or seizure. All of the symptoms and implications are terrifying, and are also a daily challenge. Alison’s family live a considerable distance from the treatment centre, and travelling means a loss of income for the family. The treatment is expensive and at the moment Alison is not having the number of treatments that she needs for the best outcome.

The symptoms of the condition are already affecting Alison’s life, making it nearly impossible for her to complete activities in the way she wishes. She is a lovely bubbly teenager who manages to remain positive and loves drawing and arts and crafts. The whole family is impacted by Alison’s condition in several ways including the heartache of seeing her living with pain and disability, time constraints of the care and treatment she needs, and of course financially as the cost is high.

Solution

For Alison to have the best chance of gaining use of her arm, and getting the surgery she desperately needs, the family needs help! Hilario has such an impact on the divers he meets, always spotting wildlife before anyone else, and using his deep knowledge of the sea and weather conditions to make sure the team stay safe, it would be wonderful if as a global community we could help his little girl get better! Moyamoya is such an unusual condition that any increase in awareness will improve support for all who have been diagnosed, not just Alison. So please share to your contacts and any social media you may use!

Long-term impact

Alison’s dream is to become a nurse or join the military so after she has graduated her hope is to continue studying in order to achieve this. The long term impact of moyamoya for this family is huge, any support would improve the whole family’s quality of life and life chances, as well as easing the financial burden and stress that having a child who is suffering inevitably causes. Raising awareness of the condition will have a long-term impact on everyone who is diagnosed or is yet to be diagnosed as communities will have more understanding of the condition and will be more likely to support researchers to increase their knowledge of the disease and treatments and open up more access to funding.