Help Lily get the special needs bed she needs

My Dear Family & Friends!

I am updating our page to let you know that Caroline has learned that since she and Josh are paying out of pocket for Lily’s bed, the price is different. With tax and delivery, it is half of what we thought! And thanks to all of YOU!, we are almost there.

It is end of the year, and the company is adding almost 4k worth of additional perks to this bed if it is ordered before December 31!

Can we do it??

Can we get this bed for Lily by December 31?

I know this is asking an awful lot being Christmas time, but if you can’t , could you share this?

And for you who asked, yes, there are other special needs beds, but this is the only soft framed bed to keep Lily from hurting herself. Others are made with a wood or steel frame. This is a specific, Doctor recommended bed.

You each have brought tears to my eyes ( literally!). I have been so humbled by this journey, and I thank each and every one of you. Thank you!

Here is our original post:

Hello to our family and friends. I am not one to ask for help, but here it goes... As you know (or you are about to learn), Mike and I are grandparents to a very special young lady. Miss Lily . Lily will be 4 in February. Allow me to give you a brief history on her if you do not already know.

When Lily came into our world, we were all thrilled. She was all smiles from day one. Nothing but love and snuggles. We didn't see any problems at first, but when soon we noticed she wasn't making her normal mile stones . To make a long story short, we thought she had autism. She wouldn't talk, and she would not (or could not) start eating big girl foods. When she did start walking, she walked on her tippy toes.

It took FOREVER to get her in to get diagnosed with a specialist. When she did, she was indeed on the spectrum of autism (the doctor put her at level 3), but her parents also did genetic testing.

When Caroline and Josh got the genetic results, we were all shocked. Our precious little girl is not only Autistic, she is also born with a rare syndrome called " Smith-Magenis syndrome".

What is this?

is characterized by distinctive physical features (particularly coarse facial

features that progress with age), developmental delay, cognitive impairment, behavioral abnormalities, sleep

disturbance, and childhood-onset abdominal obesity. Infants have feeding difficulties, failure to thrive,

hypotonia, hyporeflexia, prolonged napping or need to be awakened for feeds, and generalized lethargy.

One important thing to note at this age is it causes sleep issues. And with Lily this is the case. Lily is still in her crib and has out grown it. Lily desperately needs a special needs bed. Her doctor put in the order for the bed she needs. MOST STATES allow this to be paid through insurance. Sadly, not in North Carolina. This bed costs over $14,000 with tax and shipping.

This is very overwhelming.

Caroline and Josh are already paying out of pocket for the needs that sadly insurance refuses to pay for Lily's needs (like her orthopedic shoes). It's a crime.

We need to help them. I'm asking for a Christmas miracle. $5? Could you just pass her story around to anyone you know? We really need this bed for Lily.

Thank you from the bottom for our hearts.