Buying time with Ayax
I am Bridie, a friend of an awesome and resilient couple Ben and Suli. I'd like to invite you to support this young, motivated and loving couple. Ben and Suli live in a remote village in Andalusia, Spain. They have a daughter Aireen age 5 and their son Ayax, age 2.
Their world was turned upside down when Ayax was diagnosed at .... months with Menkes Disease, a disorder caused by a mutation of the ASTP7A gene. This ATP7A gene affects how the body transports copper and maintains copper levels. Copper helps with metabolism, brain functioning, blood vessel and blood cell formation, wound healing and the immune system. Copper also helps to convert iron into a usable form in the body.
Menkes disease occurs mostly in male infants and affects in America about 1 in 100,000 live male births. It can lead to serious damage to the brain and nervous system and can harm a child's development. Children with Menkes syndrome typically begin to develop symptoms during infancy and often don't live past the age of 3 years. If you would like to understand more about Menkes please watch this touching documentary Menkes Disease : Finding Help & Hope
What Ben and Suli need is to keep Ayax comfortable, give him and Aireen the attention they deserve and make their family time together memorable and special, to allow quality experiences and love to fill these remaining precious months together with Ayax.
Ayax is totally dependent, he can not even sit up. He needs constant care as if he were several months old, not 2 years old. After covering normal living costs, trips to Ayax's medical appointments, normal life and needs, there is nothing left to help them buy the time they desire, time to give Ayax massages, physio, exercise and attention, time for Aireen, time to be family, time to be a couple.
In an ideal world they would have received social security support, however bureaucratic processes have been so impacted by COVID with soaring applications and slower processing that 1 year after completing their application for support, despite their URGENT needs, Ben and Suli have received no financial support and are still waiting.
We are hoping to raise funds NOW, there's no time to wait or to waste. They need finds to pay for a part time helper who can assist them to create and space, which will allow them to enjoy one another during this little time Ayax has. Your donation can help gift them this happiness. Donate a special memory today :)
