fbpx
est. 2015EXPLORETRAVEL & STYLE

THE BLOG

Elsie – A little girls journey with Smith Lemli Opitz Syndrome

Smith Lemli Opitz Syndrome is a lifelong disease,  be completely honest I had never heard of SLOS (Smith Lemli Opitz Syndrome) before, and when Elsie’s mum Kayleigh messaged me, I tried to read everything I can about it before our session.  I wanted to make sure I knew the basics as not to handle little Elsie in any way that would upset her.  When meeting this little girl I was just amazed by her, not only is she absolutely beautiful she just had the cutest personality.  A mothers love never ceases to amaze me. The way Kayleigh looks at her little girl with such joy in her face brought tears to my eyes.  Elsie is very lucky to have Kayleigh as her mummy.
Here is a little more about Elsie straight from her mummy Kayleigh.

“Our wonderful daughter Elsie was born in October 2017 and spent a total of 17 days in Special Care before she was able to come home.

When Elsie was just 2 months old, just 2 weeks after Christmas our whole world was turned upside down when we received the news that Elsie was born with an extremely rare genetic disorder called Smith Lemli Opitz Syndrome (SLOS) to which there is currently no cure. Sadly, children with the most extremely severe cases are either miscarried or often die just a few months after birth. SLOS is so rare that it only affects an estimated 1 in 20,000 to 60,000 newborns.

SLOS means that Elsie is unable to produce enough Cholesterol for normal physical and mental development. Wev’e been told not to expect much from our daughter in that she is unlikely to ever walk, talk or eat orally, however we’re determined to support Elsie to achieve her own potential.

Very little is known about SLOS in the UK and there is little research being undertaken here. We have been fundraising locally to raise money to take Elsie to America to see specialist Doctors, to meet other families of children with SLOS and to learn more about how best to support our little girl both now and through her future. We have been overwhelmed by the support we’ve received and have recently exceeded our target. Money in excess of the cost of our trip to America will be used to support Elsie, I.e specialist equipment etc.

Elsie is a delightful and placid baby, she loves cuddles and music. Elsie is now smiling, babbling and rolling over from her side onto her back. Elsie enjoys baths and splashing about in water! She is certainly a determined little girl, she knows what she wants and likes and already seems to know how to get it!

Elsie doesn’t fit into the standard graphs and charts but is making her own path and journey in life. We call this Elsie’s Climb, to quote the lyrics from the song “There’s always going to be another mountain, I’m always going to want to make it move, always going to be an uphill battle, sometimes I’m going to have to lose, it isn’t about how fast I get there, isn’t about what’s waiting on the other side, It’s the climb”.
Elsies beautiful romper can be found here at www.laceandwildflower.com
If you have a similar story please get in touch here
smith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uksmith lemli opitz syndrome oswestry shropshire uk
Add a comment...

Your email is never published or shared. Required fields are marked *

 

Janine Speake Photography

Pentre Coed House

Oswestry

Shropshire

SY10 8HB

 

Newborn & Family Photographer based in Oswestry, Shropshire, covering the whole of Shropshire, Cheshire, North Wales, and all the little towns in between.

FOLLOW ME

T. 07557 269 891

E. info@janinespeake.com

UA-65045190-1