Meet Claire

Last weekend, we met Claire.  She is another I-Cell girl.  She is 4 years old and lives in Cupertino.  I found this family on Facebook.   

With such a rare disease (and not to mention unfamiliar to our doctors), one can feel totally isolated and helpless.  When we received our diagnosis, I scoured the Internet for information.  After reading the first four or five medical articles on the subject, I can see that they offer the same bare minimum information.  I wanted a better vision of the life we should expect.  I wanted to know what is Niko’s baseline.  Is she doing well for an I-Cell baby?  Is she severely affected?  I want to know how I can help her along the way.  I can only get this kind of information from other parents who are going through this or have lived through this.  So I started to search for blogs regarding I-Cell.  I found a couple blogs.  One woman mentioned that she met other families through a Facebook support group.  And when I joined the group, it was the jackpot.  I think almost all the I-Cell families are in this group (and not just limited to the USA).

I was so thrilled to have found another family in California.  And not just California, they are in Cupertino, about 1.5 hours away from us.  To give you an idea of what a miracle this is, I found a woman in Australia who has the only I-Cell child currently recorded in the country.  She feels so utterly isolated.  (Ironically when I lived in Sydney, I was only minutes away from where she is now.) 

I contacted the parents of Claire right away and we set up a time to meet.  We visited their home in Cupertino.  They have an older healthy daughter who is about 7 years old, Claire who is 4 years old, and a set of twin boys (unaffected by the disease) who are 2 years old.

We learned a lot from them.  It was very interesting to see Claire, and to see what a 4-year-old I-Cell kid can do.  I understand that I-Cell kids are all different and can function at many different levels.  But I found this meeting extremely helpful.  The parents were so warm and generous with their advice.  While bizarre, it's touching to meet another I-Cell family.  Kids affected with I-Cell have very similar features and hence they look like they are related.  That physical similarity coupled with the exclusiveness of I-Cell makes us instantly comfortable with each other.  They shared the ways they were able to cope with this consuming disease.  They talked about the help they were able to get from California Children’s Services and the referrals they were able to get for Early Start, which is a state funded program for various forms of physical and occupational therapies.

Claire’s family agreed that I can share her photos.  

When she is outdoors, Claire uses this walker to get around.  It puts her in a semi-seated position.  She's quite fast.

Claire does not walk or crawl.  To get around the house, she does torpedo rolls on the floor and is lightening fast.  

Claire's eyes started to become a little unfocused.  She got glasses but never wears them.

Claire is very good at sitting (a huge feat for I-Cell kids).

Four years old and rocks the best hair of any kid I know. 

Mila with their other kids.