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#26954 - 10/05/10 06:10 PM Looking for parents who had child with Harlequin
kasey4201 Offline
New member

Registered: 10/05/10
Posts: 2
Loc: Arkansas
I am looking for people to reach out to that have had a child with Harlequin Ichthyosis. My son died of this rare condition back in March of 2010 and it came as a huge shock. I had never heard of this condition and certainly never thought something so horrific could happen to such an innocent soul. Please contact me if you have gone through this. I am curious if anyone has had healthy babies after experiencing this without undergoing In-Vitro. Please help.

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#26955 - 10/06/10 01:11 AM Re: Looking for parents who had child with Harlequin [Re: kasey4201]
Mr. Henderson Offline
Member

Registered: 09/17/10
Posts: 10
Loc: San Diego, CA
I found someone on myspace' that lost three babies with H.I. I was looking up the condition for a report and came across her I believe her name was Pam. I typed in Harlequin Ichthyosis in the myspace blog and came across her' we didn't talk. I just read her profile. And I am so sorry for your loss


Edited by Mr. Henderson (10/06/10 01:12 AM)

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#26959 - 10/07/10 01:15 AM Re: Looking for parents who had child with Harlequin [Re: Mr. Henderson]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
so sorry for you loss!
The only way to ensure your next child does not carry the defected gene would be through IVF and gene selection process. It would be a gamble other wise.
Again, my prayers and thoughts are with you with your loss.
Take care
Kim
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#26969 - 10/10/10 08:58 PM Re: Looking for parents who had child with Harlequin [Re: KimNL]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
There are several parents here and involved with FIRST that have children with HI. Unfortunately, it is the most severe type and continues to have around a 50% mortality rate at birth. Children that survive the newborn period usually do well, but it is a lifelong struggle to manage the skin no matter how you look at it.

The only surefire way to prevent another child from being born with HI is to undergo IVF/PGD and only implant embryos that are unaffected.

You can also become pregnant the usual way and abort after screening, but that has all sorts of moral and ethical and emotional issues that most people would prefer not to subject themselves to.

HI is a recessive disorder. You have a 1 in 4 chance of having an affected child, a 1/2 chance of having an unaffected carrier and a 1/4 chance of having a child with no mutation copies in their genes.

If you contact FIRST, they can put you in touch with a couple of our HI families. Their new number is 215-997-9400.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#27023 - 10/26/10 07:29 PM Re: Looking for parents who had child with Harlequin [Re: Hearsay]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
I am so sorry for your loss, it sounds like you have a some great information here. I will pray that you are able to have a healthy family!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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