06h 38m 22s
I'm walking for Maeve. The shining light in our family.
As most of you aware, Maeve was diagnosed at 18 months with Leigh's Disease. A neuro-metabolic disorder where she is left unable to walk, talk and eat without assistance.
In the last couple of months we have finally had preliminary results back from blood tests to reveal the affected mitochondria in her cells, were unable to match anything else on the international database. This means she's the only one in the world recorded with this fault. Unfortunately this news, means we cannot predict how Maeve will be affected in the near future, due to this finding.
On a positive note, in the last year, Maeve has made an incredible amount of life progress. Since getting her PEG (feeding tube) last June, she has put on weight...we have broken the scales with double digits! Physiotherapy has left her with walking about 4m unassisted with the help of a walker, which she uses daily. And Speech therapy has also fine tuned a handful of words/hand movements that enable her to communicate to us.
Honestly this beautiful being, surprises me everyday with her determination,willingness and fight. I watch in awe of the things she has to go through on a daily basis, things that bring me to tears, because you would not wish this upon anyone. Mito robs her little body of energy, which will eventually lead to organ dysfunction/ failure.
I don't want Maeve to be defined by this, as it's merely a small part of who she really is. A teeny tiny girl, with the biggest heart and an even bigger personality.
I'm walking 35km in The Bloody Long Walk to help not just Maeve, but all Australians living with mitochondrial disease.
If you want to donate to the cause, we would be ever so appreciative.
Thank you to my Sponsors
The Dunkley Family
Zoe And Dano O'brien
Lila, Dusty & Harry X
The Line Of Sun
Aimee Afflick (lueysmum)