Ella

Eella2lla is 3 years old – nearly four!!! – with a rare brain disorder called Congenital Bilateral Perisylvian Syndrome and a rare intestinal disorder called Enteric Neuropathy which has left her intestines unable to function. It also affects her nerves. Ella is survivng on 100% TPN, IV nutrition. Since TPN is supposed to be short-term which can eventually cause organ failure.  There is no cure for these disorders. Ella is one of the strongest three-nearly-four-year-olds I know. I love you, Ella! ❤ 

I wrote a parody of Fight Song by Rachel Platten for Ella. 

 

 

Diagnosis
Does not worry her

So many cords

Does not bother her
Though it is different

It’s all she’s ever known
But Ella is proud of it
‘Cause nothing can change who she is

And all those surgeries she’s had

Those tough doctors appointments

She has strongly pulled through

And now she shouts happily

She’s such a strong girl

She’s such a young girl
She’s such  a fighter girl
And with a smile she twirls
She’s such a fun-loving girl

Look up to this girl
And she does not care what the doctors will say
‘Cause she’s a superhero with no cape

 

Her  parents worry about her

Her siblings love her to death

She loves them too

Says she loves them too
Many hospitals

She misses home

Yet she’s got so many prayer warriors
And we still believe

Still believe in her

And all those surgeries she’s had

All those tough doctors appointments

She has strongly pulled through

And now she shouts happily


She’s such a strong girl

She’s such a young girl
She’s a such fighter girl
And with a smile she twirls
She’s such a fun-loving girl

Look up to this girl
And she does not care what the doctors will say

‘Cause she’s a superhero with no cape

A superhero with no cape


Diagnosis
Does not worry her

So many cords

Does not bother her
Though it is different

It’s all she’s ever known
But Ella is proud of it
‘Cause nothing can change who she is

She’s such a strong girl

She’s such a young girl
She’s such fighter girl
And With a smile she twirls
Fun-loving always she is

Look up to this girl
And she does not care what the doctors will say
‘Cause she’s a superhero with no cape


Because she’s a superhero with no capeella3

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