A cure for Crosby

Our little boy, Crosby was diagnosed with Morquio syndrome (type A).
This is a horrible disease with no cure. Paralysis, breathing problems, heart failure, death, spinal cord damage, knocked knees, crippling of the bones, vision problems, pain, walking problems, and shortened life are just a few complications (not to mention the numerous amount of surgeries along the way). We often cry ourselves to sleep and if we don't do that, we both wake up in the middle of the night in hot sweats and can barely breathe. We have cried for selfish reasons such as our aspirations for Crosby,  for our new life at the hospital every week and the stress it may have on our marriage. We  have cried for him, for the fact he doesn't deserve this, for fear of how his school friends might treat him, for fear girls may not go to a dance with him because of this, for fear he may be defined by his diagnosis and not by who he really is, for his questions later in life such as, 'why me?' We have been struggling with how to accept all of this but what has helped is our faith and determination! We are determined to find a cure. We have been told there isn't much awareness for this disease, so there isn't much funding to find a cure. Every doctor has told us there is no cure, and all I think in my head is, 'nope, not good enough, there has to be a way.' I often think of Appollo 13. Remember when NASA was trying to get them back to earth safely? Remember the character who put a bag of blocks on the table and said something like, 'we have to get this (a square) to fit in this (a circle).'  To me, that's the only way to think! That's what we need to do for Crosby and hopefully break through a barrier for all Morquio patients. Up until two or three years ago there was no treatment for Morquio. Recently they developed a treatment of enzyme replacement therapy (a weekly enzyme fusion that takes six hours from start to finish). It's not a cure, nor does it help with the bones but we were told it can buy Crosby some time until something else is available. We want to do more. We need to do more for him. My fire has been ignited by an indescribable love for Crosby and feel the only way to stop Morquio from taking over his body is to be pro active and come at it every which way. Over the past few months I have been researching and looking into stem cell therapy. It's controversial and it's not guaranteed it will help Crosby BUT it very well may! It could possibly help ignite his body to produce (naturally) these enzymes he lacks and maybe reset things. They don't know for sure but it is some hope! Some hope for Crosby. This process is quite pricey and we have no clue how we're going to pay for it. I asked the doctor and they told us most people fundraise. It's incredibly hard for us to ask for donations because we can't even ask for help when people say 'let me know if you need help.' I don't like bothering or being a burden. I know people have their own busy lives and hardships, why is ours any different? Anyway, we realize this is an incredible thing to ask, but if you can help in anyway (even if it's just sharing this post to bring awareness of the disease itself). We thank you from the bottom of our hearts and with such love for this little boy who didn't ask to suffer like this.
You can also follow his journey on Facebook https://m.facebook.com/acureforcrosby/
Much love,
Kerri, Keir and the boys