The Miracle of Normal

That's my fancy new logo. My husband was smart enough to befriend the nicest guy in his office who also happens to be a brilliant graphic designer. And in exchange for photos of his family in perpetuity he designed a logo for me. We had a brief email exchange in which I said very little about actual design. I wrote of mood, feeling. And somehow he was able to cull, from a sentence I sent him in an email, this logo that says everything I want it to say about me and my business. He's a genius.

Long overdue and with a heart full of gratitude and humility I arrived at their charming home to begin the first of many gazillion photo shoots with their family.

This is C. A completely normal 8 year old kid. Active, healthy, good student, loves his dog and sports and video games.

What is not at all obvious from looking at him is that he is a miracle of modern science. You see just a week or so after a perfectly normal 6 month old check up little baby C was in the PICU on a ventilator. So sick there were periods of time when they wondered if he would make it. And after running a series of tests and trying to determine what was going on with the little guy they discovered he had a rare genetic condition called XHIGM Syndrome. So they were faced with not only the challenge of getting him through his current bout of pneumocystis carinii pneumonia but also looking at an uncertain future even if he were to survive.

Ironically enough, baby C was taken off the respirator after 3 weeks and breathing successfully on his own on September 11, 2001. That's a date that means something to all of us. Can you imagine all this family was facing that day?

So he was in the clear for now but there was still the genetic condition to worry about which basically compromises the immune system. The cure for the condition? A full stem cell bone marrow transplant. Neither parent was a complete match. Their only hope was to have another baby who could be a match. They turned to IVF and some mad scientists. Two rounds and 27 embryos and only 1 was even viable. And that special one just so happened to be a complete match, a girl (girls are carriers and don't have the condition) and, lucky for her and her future, she wasn't even a carrier.

Meet 6 year old E, lifesaver extraordinaire....


E just explodes with life. She has enough not only for her and her brother, but for her entire family, block, town, city, state and country. She's joyful, enthusiastic and quite possibly the silliest little thing I've ever met.

When E was a year old she was able to give a successful bone marrow transplant to her brother which effectively cured him of the condition.

And it's clear she feels some ownership.

It's impossible to imagine all this family has been through. They've each had their own unique experiences and journeys and jobs to do. But having recently celebrated the 5 year anniversary of the success of the treatment, their life is simply normal. A gift and a blessing they hoped and prayed for in their darkest days.

And C & E are like any other siblings. Rough housing, annoying one another, playing together. But there's something between them you won't find in other families. A quiet undercurrent of all they've been through. Some intangible bond that is rather breathtaking to witness.


Miraculous aren't they?