Living Life with Lilyana’s medical complexities

Lilyana is 5 years old and has very a complex and rare genetic condition, Rhizomelic
Chondrodysplasia Punctata type 1 (RCDP), a
rare and terminal form of dwarfism that affects every part of her body with the biggest part, for her, being her airway/lungs. There are less than 100 people alive in the world with this rare
genetic condition that has a life expectancy that ranges from months to teen years, with most
living to 2-5 yrs. Those that live to be 5 yrs old
and older are considered long term survivors. 

Lilyana found her way into our home and hearts through foster care and now guardianship. We 
knew that Lilyana needed a permanent family tolive out the rest of her life with, so after a battle with DCYF, we were awarded custody of her on August 5, 2019, hoping a praying that we would be able to face all the trials snd tribulations of
raising her, advocating for her and keeping her
as healthy as we possibly could. 

After an 11 month hospital stay at Seattle
Childrens Hospital we finally got to take her
home with us. It hasn’t been the smoothest road but we are grateful for what we have been given and blessed with. 

Lily has been hospitalized more than a few times since her discharge in June 2020 and there will be more to come, we are sure. We give a lot to
God and have faith that He will lead us
wherever this journey takes us, keeping us
whole, one day at a time. 

With the commitment that we made to Lily
comes really special needs surrounding her
care, household routines/needs, and unplanned hospital stays where I remain bedside with her
to be her voice and make sure that the doctors
know as much as possible about her so she can
get the best care from them as possible. There’s so much that goes with these hospitalizations
that are unseen (dinners at home, yard work and
household duty needs, nutrition for me at the
hospital that is hugely over priced, as well as the many trips back and forth home to tend to the family my husband, our 20 yr old special needs
daughter and our 9 yr old great grand daughter
that we have raised since she was 4 mos old).
We are also constantly contemplating getting
more suitable transportation for Lily so she can be more easily transported and therefore be
able to get out and about with the family, so at
some point this campaign will include the
purchase of a handicapped accessible van.

We have been blessed in so many ways and we
are so grateful for those blessings that show us
that we are not alone in this journey, that I am
positive God has placed us on with sweet Lily. 

We had another Go Fund Me campaign that
helped us in the past but we recently discovered that it can’t be donated to because of some
technical changes with Go Fund Me so I was
advised to start this new campaign. 

Thank you for viewing this campaign and if you
can’t donate, if you could share it, we would be
so grateful. God is in control of this journey with Lily and we are grateful to God for choosing us
to experience the highs, lows, good, bad, happy, sad....but most of all the pure joy that Lily inserts in our lives everyday and we hope in her life too. God bless!!❤️❤️❤️