McLeod Whanau's SMA2 fight

Lani and Jim have a 4 year old daughter, Thea-Jayne.  They then had a premature son, Kowha, who only survived a few hours.  Lincoln was born next in September 2018 and finally little Harlan who is now 4 months old.

Somewhere between 6-12 months Lincoln stopped being able to put any weight on his legs and they were just always "floppy"  They started testing and could not find any reason for it.  They eventually went to genetic testing and 3 weeks away from being induced with Harlan they got the results back.  Lincoln had tested positive for Spinal Muscular Atrophy Type 2 (SMA2).

Summary. Spinal muscular atrophy type 2 (SMA2) is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons). Without treatment, progressive muscle weakness develops in babies with SMA2 between ages 6 and 12 months.

Since this was a genetic disorder they tested Harlan shortly after birth and got the results back 5 days later that he too was positive.

This means that from 6 months of age (24th December 2020) Harlan's muscles will start to deteriorate and he too will have completely lost the use of his legs by 18 months.

There is medication (Spiranza) that can help them and if Harlan gets it before Christmas eve this year he has a very high chance of remaining asymptomatic and running around like a normal healthy boy. For Lincoln, this medicine will help get a small amount of strength back into the muscles that have already deteriorated and will stop further deterioration (eg eating and breathing problems would not eventuate).

PHARMAC will not fund this medication in New Zealand and they are changing $1mil per child per year!!!

The medicine is fully funded in all established countries except Estonia, Mexico, Chile and NZ. In Australia it is fully funded - but with Covid, relocation is not an option.

We are hoping to raise enough funds so that as soon as the borders open the family can immediately relocate and get the medicine to stop the disorder in it's tracks (hopefully before any symptoms start to show in Harlan)