I do it!
In the short few months when Luke was able to talk, these were the words he probably used the most. Luke wanted and still wants to do everything. Not only everything for himself, pouring his juice, getting his cheese out of the fridge but also setting the table, serving everyone at dinner, etc. Tragically, Luke was diagnosed with MLD in February 2013 and since then it has all been going downhill. He cannot use his legs or his arms, he cannot talk anymore and cannot swallow food. We feed him through a tube that goes straight into his tummy. MLD or Metachromatic Leukodystrophy is an incurable genetic condition that has left him completely paralyzed and in a lot of pain. Eventually the damage to his brain will cause his breathing to stop and he will die. Many kids with MLD die before they reach five years old. Luke will be six in October 2016. You can read more about the illness on the MLD foundation website: http://mldfoundation.org/. We have to accept that we cannot change this and that his life will be short and difficult We have, however, decided to make the most of what we can control. We are determined to give Luke a meaningful and happy life, albeit short. For example, one piece of advice from Professor Aubourg, a Paris based doctor specialized in MLD, is to try and keep Luke's life as normal as possible as long as possible So Luke goes to school at Grady Elementary where they have a special facility in which he can be well looked after. He is happy there and interacts and plays with other kids, in his own ways.
What can you do?
This is the most common question people ask when they have taken in the enormity of the situation and it is very hard for us to share our sense of complete helplessness when it comes to our dear little boy. Since his diagnosis, we have come to understand what can help Luke and what can help us. As things get more difficult, to continue to ensure we give him the best quality time and get him to do what he enjoys without completely neglecting his siblings, we have found that we need practical help. Simple things such as preparing a meal, doing some grocery shopping, providing transportation for his siblings all go a long way. If you live close by and want to help you can check our support planner below and sign up (you will need to register to access the information).
We have also received a number of very generous financial donations from family, friends and strangers, for which we are extremely grateful. In November 2014 Luke's Florida Kidcare insurance started covering the cost of a nurse for Luke in our home 8 hours a day, seven days a week. Until then, the cost of long term care in the home had been our biggest financial worry, because Luke's primary insurance (Aetna) had consistently refused to cover this. Early in 2015 we were extremely lucky to have Luke enrolled in the Florida Model Waiver Program, which gives him full Medicaid. He now has nursing coverage 24/7, which is a huge help. So we want to say a very big thank you to everybody who has donated in the past. The donate button is still available (below) but we also wanted everybody to know that we are in much better shape now than we were when we first set up this web site.
We have also received a number of very generous financial donations from family, friends and strangers, for which we are extremely grateful. In November 2014 Luke's Florida Kidcare insurance started covering the cost of a nurse for Luke in our home 8 hours a day, seven days a week. Until then, the cost of long term care in the home had been our biggest financial worry, because Luke's primary insurance (Aetna) had consistently refused to cover this. Early in 2015 we were extremely lucky to have Luke enrolled in the Florida Model Waiver Program, which gives him full Medicaid. He now has nursing coverage 24/7, which is a huge help. So we want to say a very big thank you to everybody who has donated in the past. The donate button is still available (below) but we also wanted everybody to know that we are in much better shape now than we were when we first set up this web site.
Finally, MLD is a terrible illness that can start in late infancy, as it did for Luke, in older children between 4 and 8 as well as teenagers and young adults. The MLD foundation and Dr Escolar's group at Pittsburgh Children's Hospital are both in need of funding to help families and for research for a cure. Already medical trials are in progress, all too late for Luke but promising for the future. You can contact them through their web sites: http://mldfoundation.org/ and http://www.chp.edu/CHP/neurodevelopment+in+rare+disorders