Tinsley was diagnosed at 15 months with a rare and progressive metabolic disease called Mucopolysccharidosis (MPS) Typed IV A, also known as Morquio A syndrome. This very rare and progressive disease effects her ligaments, bones, and organs due to the lack of production of the GALNS enzyme. This causes GAGs, which are long sugar chains, to build up into a jelly like substance inside her body because there is no GALNS to break them down. That “jelly” is stored through out her body causing complications from skeletal issues (she has hip dysplasia and will be undergoing a hip reconstruction surgery in mid-March, and kyphosis in her back), short stature (the average height for a female with Morquio is about 3.5 ft tall), corneal clouding, weak tooth enamel, higher rate of respiratory infections, ear infections, joint elasticity, and many other complications. Each Tuesday Tinsley gets to spend the day with some of her best friends who happen to be nurses at our local hospital for a 6 hour enzyme replacement therapy that helps her body get the enzyme it is lacking! We are so thankful that this therapy is available for Tinsley, even though it is currently the second most expensive medication in the US today.
We are so excited to bring home this new addition for Tinsley and are also so thankful for your help in getting it here for her! Our handling class won’t be until 2023, but the sooner we are funded the sooner we will know and exact date to be counting down too! If you are able, any donation is welcome and appreciated as it’ll help us reach our goal of $17,000. If you are unable to donate, we just ask that instead you do something kind for someone else and think about Tinsley & cover her in prayer. This journey as been nothing short of miraculous and with your help we will be able to continue to foster growth and love for our sweet Tinsley Mae.