Making change one step at a time.

Change is coming, it is happening in Mack's treating hospital, other major hospitals in the state and possibly even interstate. Families of babies diagnosed with SMA type 1 will be given hope, they will be given options other than the standard "take them home and love them, there is nothing we can do" consensus. They will be referred to all specialists essential to allow a baby with SMA1 to live and thrive and there will be no fight for proper care (if you are aware of the proper care), the only fight will be against the disease itself. It is still up to the families which path they choose to take but at least they have options, and unfortunately it will still be up to the individual specialists expertise and if the family isn't fully informed a child's life is still at risk prematurely. So we must still educate the specialists on correct treatment. This is not including Tracheostomy, not in Adelaide anyway. Cough assist will not be recommended but it will not be denied either (in Adelaide) and families will be supported if this is the route they wish to take. (We were told cough assist will not work on a child as young as Mack and were refused the machine and support for it. It has now been acknowledged and noted that the cough assist did benefit and extend Mack's life, but with the medical professions lack of experience in this area, this is all they are willing to budge on). This is a step forward and anyone who knows how hard we fought for Mack's life will know that it's a step in the right direction. It is not a fix, by all means, but it's the acknowledgment that with the correct treatment and care, SMA type 1 kids can live longer and fulfilled lives. Why though, did it take our son fighting for his life and dying to call the medical professionals into action, and why did they ignore our pleas and pages of case studies and medical documents when Mack was alive and thriving? It's bittersweet knowing change is happening and because of Mack, yet he isn't here to reap the benefits. We are not angry, we are just frustrated and we will do whatever it takes to prevent another family facing the same fight we did and we will fight for the validity of life with SMA in Australia. Thank you for your continued support and be sure to stay tuned for further updates!