Amazing family with AGS kiddo needs help!!!

Aicardi-Goutières syndrome (AGS) is a rare genetic disorder that affects the brain, spinal cord and immune system. It is a type of leukodystrophy, a group of conditions that affect the white matter of the brain. These diseases damage the myelin sheath, which surrounds and protects the nerve cells in the brain and spinal cord and speeds transmission of messages between cells. This amazing family has provided the absolute best care and enormous amounts of love for their special needs daughter for 17 years. The state agencies and medical providers have failed this family, forcing them to manage the care themselves mostly! I've sat back and watched this family struggle physically and emotionally and never give up! They do what they have to, in order to make sure their daughter is cared for....even if it means they go without sleep, meals, etc! The in home medical providers have been of little assistance, and the state only allows a few hours a week of care, maxing the family out! Their daughter requires 24/7 care. Dad is a veteran and mom is a teacher...along with a full time job or raising a special needs kiddo! My goal is to raise funds for this family to be able to seek private care and provide for their daughter, in whatever means they can to make the rest of her short life the best it can be! Please consider donating and share, share, share.....even a few dollars can help us reach the goal! I'd love to see these numbers crushed and them have everything they need....to include peace of mind that they have adequate care for their daughter in their absence!!!