Thanks for the prayers regarding Quinn - update #1

A few days ago I asked for prayers for a little boy Quinn who is battling PHACES syndrone, a rare and potentially fatal disease that includes brain abnormalities, heart complications and severe hemangiomas. His mom just posted the first update on a discussion board for children with hemangiomas.

They live in Canada and have been fighting the government since he was born. The gov't hasnt approved his surgeries - which Doctors in the US have said should be done ASAP.

from his mom, Jen:

Thanks for thinking of Quinn,we really appreciate all of the support you all have given us for so long!

We are in Toronto and we are through with day 1 of appointments. Today we saw the ocuplastics specialist and the good and shocking (for those of you who know the history) is that he will FINALLY be getting surgery. For his eye for now anyways. He is on the waiting list for the next cancellation!

The hemangioma in his eyelid has continued to grow even though the surface hemangiomas are involuting very well with laser. We have had many many eye related issues over the past 6 weeks with constant infections, horrid photosensitivity and now increased ambloypia and astigmatism. The eyelid has also rotated forward more and flipped under even more making the ingrown eyelash issue worse. So I went in there refusing to take no for an answer but I didn't have to go there. He recommended surgery right away.

The added bonus here is that he will debulk the eyelid hemangioma in the process hopefully alleviating much of the ptosis,yeah! We are happy tonight let me tell you.

Tomorrow we see the stroke team to address some very important neurological issues and problems and we are hoping to get a clear idea of what is happening even if it means hearing some news that we may not want to. Knowledge is the greatest weapon right, at least that is what I am trying to tell myself right now.

Thanks everyone for all of your good thoughts and prayers. We have a comittment for the eyelid surgery,yeah! Gives me hope that maybe someday we will get the rest looked at too.

Hugs
Jen and Quinn

Re: Thanks for the prayers regarding Quinn - update #1

How horrible that the government is giving her such a hard time. Glad to hear she's finally getting answers and treatment. for baby Quinn.

Re: Thanks for the prayers regarding Quinn - update #1

This story is just heartbreaking - please keep us updated!