Harper's OnGoing Medical/Daily Need

Update 10/31/17:  
Weather cooperated so Harper was able to enjoy Halloween this year with her big brother and cousins.


Update 10/13/17:  We know we are long overdue on an update so enjoy the story and the new photos!

HARPER IS TWO!  On September 20, 2017,  Harper celebrated her 2nd birthday.  A long journey from two years ago when they only gave us hope of a few days to celebrate our miracle girl.

A lot has happened in the past two years but this year has even made us more vulnerable and aware that EVERY day with this child is a God given miracle!  The end of April, after nearly 18 months with no infections (albeit the occasional cold and such), we found ourselves racing to the hospital with our girl, with a raging fever and sore after sore upon her face and body.  We had NO idea what we were about to face but the next few days were tests upon more tests, and medicine and more medicine.  Finally we got answers and they had a plan in place which allowed Harper's fever to break, her sores to start to dry up and on Friday, May 5th, we brought our little girl home again.    Harper was able to see her big sister graduate from High School and head off to college (a long way from home) and Harper began to speak more and more words; she pulled herself up in the bath for another first and she even took her first couple steps.  She still isn't walking fully yet but I think we will enjoy the last few moments before she is OFF and running!  Harper has a mouthful of teeth and is weighing in at 27 pounds.  She is going to be a petite little thing!  She is wearing a 3T and her wardrobe is constantly getting refurbished!  Aquaphor might be good for the body but is a monster on CLOTHING and washing machines!   We have to keep her in very soft clothing so it doesn't irritate her super sensitive skin.    

So...here are some of Harper's favorites!  
She LOVES music (her favorite song at the moment is ICE ICE baby).   She loves to dance, play on her very own mini trampoline (see the photo - she is going to be an Olympic contender someday).  Her favorite foods are turkey and mac and cheese.  Her favorite people are - well she is 100% a Daddy's girl (see photo - this is Grimmie's favorite photo right now! Look at that impish look - don't you just want to know what she is thinking!!).  She continues to show us how truly strong and resilient she is.   She makes all of us better people by just being in our lives!   God blessed us when he picked us as Harper's forever family!!!  

And to top that off, our family has moved.  We are still in the same town of Edmonds, just a little further away from the school/church now.  We are trying to settle in and are anxious to get that tub installed for Harper, thanks to your generousity!!!  

For those who are just now visiting our GoFundMe page set up for Harper please read below to learn more about her and how you can help.   We continue to face challenges in many areas but with our faith and the large circle of family, friends and all of those in our Team Harper cheering squad - some we have not even met,  who continue to lift us UP- we know  Nothing is impossible! 

We thank you for your continued love, support, encouragement and prayers!  We know we are not alone and we are grateful!!









Harper was born on September 20, 2015 with a very rare, severe genetic skin condition called Harlequin Ichthyosis.  We had NO idea prior to her birth that she had this condition so we were not prepared for the weeks of uncertainty, lack of sleep and a constant worry as our newborn baby was spending the first few weeks of her life in the NeoNatal unit at  Seattle Childrens Hospital fighting for her life.  Harper is our true Miracle Girl.  She not only survived two major surgeries within the first week of her life but has just passed her 18 months of life.
In order to familarize yourself with Harlequin Ichthyosis you can read about the condition on line and perhaps somewhat even understand the challenges Harper and her family face in her lifetime with this conditon.    A wonderful resource is FIRST (Foundation for Ichthyosis and other Related Skin Types).  The hope is, of course, for a permanent cure but if not,  finding  something that will certainly make it much more manageable and comfortable for Harper and others who share in this condition.   As we speak, there is a whole team of dedicated doctors and medical staff around the world working on just that!! 

Here is a brief description:
Harlequin ichthyosis is a severe genetic disorder that mainly affects the skin. Infants with this condition are born with very hard, thick skin covering most of their bodies. The skin forms large, diamond-shaped plates that are separated by deep cracks (fissures).

Although there is no cure at this time , with proper daily treatment which includes among other things, a "long" (45 minutes to an hour) soak in a tub multiple times each day (note: we hope to acquire enough funds to not only purchase but also make the necessary major changes to the existing bathroom, to install a specialized tub called a Microsilk Hydrotherapy tub) and then immediately after her bath, applying a very thick coat of a lubricant called Aquaphor to her skin multiple times a day, she will be able to live a fairly normal life.   The company who manufactures Aquaphor provides us with one case per quarter free of charge which lasts approximately 36 days.   The remaining days in each quarter we must purchase this on our own.   In addition to Aquaphor,  we also use a very costly cream called Tazorac which helps immensely on her scalp but is constantly rejected by insurance and is approximately $400 a tube. 

This fund has been established to help with the mounting medical costs that are NOT covered by insurance and OTC items that are not covered by Health Insurance or any state/governmental programs.   Keep in mind, she can not use anything that contains alcohol; fragrances or dyes of any kind!  This means lotions; soaps; laundry soap,  to name just a few.  Because her skin is so "raw" and delicate, her clothing must be very, very soft.  We try to keep her in Organic cotton for the majority of the time.  She wears a special one piece pajama at night that has attached hand coverings which are purchased from the Eczema Company and definitely are not inexpensive ($110 per suit) but anything that helps with her comfort is worth it!  The material allows her skin to breathe so she doesn't overheat, keeps her comfortable and really allows the Aquaphor to keep her skin moisturized.   The list goes on and on.   Please know that all funds are used for Harper and  her needs. 

Setting up and keeping this fund open is also a way to provide for friends and family that are not in the area but want to help with Harper's needs. 

We are grateful for your support - financially, spiritually and emotionally this past year.   We are forever in your debt!

Thank you.