McLeod's Sons

$17,865 donated

Given by 155 generous donors in 9 weeks

Lani and Jim have three children. The two youngest boys Lincoln (22 months) and Harlan (4 weeks) have just been diagnosed with SMA stage 2.

Canterbury

On Thursday 4th of June, when Lani was 35 weeks pregnant with Harlan, Jim and Lani got the heartbreaking news that their son, Lincoln had been diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA) stage 2. This meant that little Linc was never going to gain the use of his legs and although he will have a normal life expectancy it is going to be a complicated journey for him.

As if this news wouldn’t be enough for this young couple, they were also told that there was a 25% chance that their baby, who would be with them in 3 weeks, would have the same condition.

On 24th June, Lani and Jim welcomed baby Harlan into their family. His blood was taken fairly immediately and sent off to be tested. Five agonising days later, the results were back and his diagnoses was the same as Lincoln. This now means this young, loving family are now faced with raising two sons who will never have the use of their legs as well as a host of other health difficulties.

Dana George's involvement (page creator)

Relation of Lani

Use of funds

Wheelchair accessible van that can accommodate both wheelchairs at once.

Update 1 11 August 2020

Lani and Jim were informed last week that because Harlan has a confirmed diagnosis, if he was to receive the initial medication before he was 6 months old, he could remain asymptomatic for longer. They were then informed that PHARMAC would not fund this and that they had to only come up with a million dollars to pay for it themselves!!!

****This medication is fully funded in Australia BUT not here. With Covid, it means there is no chance of relocating! It's so hard to know that there is help for him right here but that its out of reach!!

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