Uniting Christian Parents of Children with a Disability

What is The 139 Collective and why do you need to know about it?

To know about The 139 Collective – a support group for Christian families living with disability – you need to meet Igraine and Josh Lim and their boys, Josiah and Eli.

Igraine and Josh had a “fairly complicated pregnancy” with first son, Josiah.

In the womb, Josiah had to be operated upon. Fluid had to be drained from his lungs as it was stopping their development.

Many questions swiftly emerged for Igraine and Josh. Would their son survive after birth? What action might be taken before his birth?

“We basically lived through that pregnancy with a lot of unknowns,” Igraine said.

“But miraculously he was born in 2018, healthy and well. I think we had a whole two days thinking everything fine.”

Sadly, Josiah’s health plummeted. As Igraine and Josh were to take him home, Josiah needed heart surgery and was having trouble breathing.

Adding to an already nightmarish scenario for new parents, Josiah began to have seizures.

“Eventually, he was diagnosed with a rare condition called PACS1 Syndrome,” Igraine said.

To the best of the Lims’ knowledge, only about 200 cases of PACS1 have been diagnosed – across the entire planet.

The developmental delays associated with PACS1 are significant and enduring.

As the Igraine and Josh cared for and loved Josiah, they sought out help and support from people in a similar family situation.

Actually, they were seeking a support group. A wide range of parents and families whose wisdom, experience and faith they could draw upon.

But the Lims couldn’t find any such group for Christian families living with a disability.

Those close to Igraine and Josh suggested that they start such a group.

Totally aware of being novice parents and not pretending to be experts in support groups, the Lims decided to give it a go.

So, the 139 Collective was born and Igraine and Josh told Hope Afternoons all about it, including what it means for their Christian faith.

Listen to the full interview with Igraine and Josh in the player above.

Article supplied with thanks to Hope Media.