Maximus, 9

Missouri · Phenylketonuria (PKU) · Annual costs: $30000

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so many. Our son Maximus 9 y/o noticed a taste difference in his formula & refused to drink it. He was off formula & his Kuvan medication (we crush his kuvan tabs into his formula). Not drinking formula meant no Kuvan either.

He was off his formula & Kuvan for only 5 days. His blood PHE level skyrocketed and he was displaying many behavioural problems. He was moody, erratic, emotional, crying, frustrated & bouncing off the walls.

Once we go him back on his formula & medication it took a further month to get his PHE level back into range & his symptoms to fully reverse.

I can not imagine having to see my son in this much distress & pain struggling for mental clarity due to no medical coverage.

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