Emily Margaret Casey
Birthday July 31, 1996
Emily Margaret Casey, born 31st of
July 1996 at home, in a birth pool in the small hours of the night. She opened
her beautiful eyes to candlelight. I held her as our midwife checked her
over. My husband Dermot and our two teenage daughters Sarah and Gillie
marveled at her perfection. Three years later, Christopher arrived, in the
bath this time! We were happy beyond our wildest dreams.
Emily was so bright and
intelligent, she spoke fifteen to the dozen, she started to draw (with her
left hand) when she was 3 and a half, she danced and sang, she twirled around
in her tutu, she ran, jumped and climbed. She used to bring her toys up to
the top bunk when Chris got big enough to try and get them! The new
millennium seemed to be bringing us more joy than we had ever imagined. A few
days before Emily got sick, Gillie (who was 17) said to me "Mum I feel afraid
because we are so happy..." and I said to her "It's OK to be happy, we're
meant to be happy, that's how we really are meant to be". It's what we were
created for, I still believe... a few days later Emily fell ill.
She had minor fluey symptoms one
Saturday evening. I gave her Calpol (Tylenol) and they receded. I actually
suspected a UTI. I checked her after Chris fed at 4.00 am. Her temperature
was up and she had wet just a little. Without switching on the light I changed
her sheet as she slept and thought 'a UTI for sure'.
On Sunday, 15th. October 2000 at
8.00am I woke and looked at Emily. She had a blue mark on her face, then I
looked at her legs. They were turning black and blue. I knew at once this
was meningococcal sepsis and I ran to phone an ambulance. While we waited she
woke, spoke - her last words with an intact brain 'My hand smells funny'. The
skin was breaking down. Emily vomited coffee grounds and when I tried to lift
her up to the ambulance men she was floppy and I couldn't even do that. Chris
slept through the whole thing and as I left the house I could not know that it
would be 3 weeks before I saw him again.
In the ambulance Emily's lungs
were failing and they were giving her oxygen. When we got to the hospital
they had a team of doctors waiting for us. It was bizarre, like being in
something on TV. Within minutes she was intubated and on her way to Intensive
Care. For two days we waited outside in this awful yellow room, waiting,
waiting. They only let me in for short visits. We got Sarah (19) and Gillie
(17) to come in too because we were afraid they might not get to say Goodbye.
After 48 hours they came to tell us that they were losing her and nothing they
could do was improving her condition. That was when I insisted on being let
in there all the time. I wanted to start fighting for her. I sang and read
and touched. I spoke constantly so she would know I was there all the time.
I told her over and over that she was getting better. I prayed. We prayed,
our rector and other clergy and friends came and prayed with us. I blessed her
with medals and relics sent from all over Ireland. The room filled with toys
and flowers but her body continued to bleed. They drained both lungs, they
drained her abdominal cavity, they poured in 13 units of whole blood, plasma
and fresh frozen platelets. If anyone asked was there anything they could do,
I said "give blood". (Someone out there had donated the blood that was pouring
into Emily and I thank them with all my heart).
Eventually Emily's vital signs
began to stabilize. She had spent four days in drug induced sleep but her
eyes remained equal and reactive. On the fifth day her eyes became fixed and
dilated. The disease had attacked her brain. CT scans showed multiple
strokes - many small bleeds throughout the brain. This was the point when we
thought that they would want to withdraw Intensive Care. We feared that she
was brain dead. I felt the presence of God, I felt a quietness and I found
myself trusting that if she fell, she would be gathered into infinitely loving
hands. I begged to be allowed to keep her.
For the next 3 weeks as Emily's
physical survival gradually became a possibility, then a fact I watched and
sang in ICU. My little girl had no speech, no movement, no responses. Her
eyes opened but seemed unseeing. She scored 3 or 4 on the Glasgow Coma
Scale. We took stock. Her left leg was mangled from the knee down, a mess
of ruined skin and bone. Her body was covered in wounds, some enormous. She
was alive. They moved her down to St. Anne's ward and I worked at feeling
gratitude and hope. I sobbed for hours one night, despair sneaking in around
the brave front. The next morning, Saturday, four weeks after she had
fallen ill, I was shaking a little red rattle. Sun poured into room and Emily
smiled. There are no words for how I felt! Dermot came in a few hours later
and I told him to try and make her laugh and she did!! Neurology came down to
check out our story and the doctor left beaming, saying 'Congratulations'.
The little girl who danced around
our home until the 15th. October 2000 has never really returned. We have a
distilled, more limited, profoundly changed child today - yet she is still lit
by the same immortal spirit. This child is a valiant being who stayed in part
because I called her back with such love and longing. But her survival was a
choice she made, a choice that lies between her and God. Emily is here at
God's will and I just have to trust that between the two of them they have a
Emily also owes her life to the
staff of Our Lady's Hospital for Sick Children, in Dublin, Ireland, where we
stayed for 5 months. During that time I slept on a mat beside her bed and my
sister Caro became foster mother to Christopher. Physio started trying to get
Emily moving. At first, the only thing she could move was the middle finger
of her left hand. Orthopaedics and Plastics saved her left leg from
amputation although it is severely deformed. They will be working on it for
years. Her right leg is affected by hemiplegia from the strokes and has no
movement below the knee. Eventually we moved to National Rehabilitation
Hospital, Dublin, for another 14 months. By the time we were discharged from
NRH she had begun to recover a version of herself and the staff worked
tirelessly to maximize her recovery.
By discharge Emily had begun to
crawl and had good use of her upper body. She was kitted out with a
wheelchair, fitted for bilateral AFO's (ankle foot orthoses) and was beginning
to take steps in a walking frame. Today she crawls FAST, can knee-walk about
12 paces and tries to take steps through her feet. She manages 2 before she
goes wallop. I have to be very watchful! She can really cover ground in the
walking frame although she uses the chair for longer trips. She can self
propel in the chair but if we really want to go anywhere, I push. Emily tells
people "I am a girl who has lots of ways of getting around". She does
remember being able bodied, and that is tough on her.
Unfortunately Emily has recently
been diagnosed with epilepsy which presents as absences and tummy pains. This
was a blow, as we had hoped she would escape this sequel and it has
implications for the future. She has been responding well to the medicine she
has been given (sodium valproate). Overall, her neurological recovery has
been nothing short of miraculous.
Today Emily can speak very
clearly, with humor and intelligence, but slowly and with word finding
difficulties. Her social skills are sometimes inappropriate, her short term
memory is affected but improving and her mental processing is slow. Although
her intelligence is good her speech and communication are not quite good
enough for her to keep up with other children. Emily is more in the company
of adults and of her faithful brother Chris and special cousins Siobhan and
Roisin. Still she keeps on trying to succeed with other children and we hope
and pray she will have friends one day.
Emily has learning difficulties
but with extra support is beginning to read a little and count up to 20. She
is drawing again and starting to write. She is thrilled with her
accomplishments and is turning out to be a beautiful singer. She loves her
Disney videos and can sing and recite whole scripts!
As we approach her eighth
birthday, Emily is most often cheerful but does get frustrated and furious at
times. Disability makes everything SLOW. We all get frustrated despite the
fact that we get a lot of support from Enable Ireland and from Emily's school
placements. We sometimes have sad moments. Yet we also are really having fun
together as a family again. Sarah (23) is about to graduate brilliantly as a
textile designer, Gilly (21) is a fashion student and doing very well,
Christopher is 4 and goes to Montessori and is mad about Star Wars.
Dermot and I are pretty exhausted but pretty happy again too.
We all delight in the Emily we are
blessed to have with us today.
Most importantly Emily is a child
who can give and receive love (and laughs and tears and big hugs). Whether
she ever would be able to know love again was the terrifying question that
hung over our heads during all those dark days in ICU. I am overjoyed that
the answer is YES.
We are blessed to have found
Frankie Milley and Meningitis Angels. I thank God for Ryan, for Frankie and
for all of you out there whose lives have been altered forever by this
disease. And I thank God, most of all, for Emily.
by Emily's Mum, Stephanie Casey.
Sweet Emily with her Angel Bear from
Frankie and Meningitis Angels
Dearest Frankie, thank you a
million times. What a special morning it was today, Emily was so excited to
receive a parcel. We read her name and I helped her to read the address and
it was a treat to watch her open!! The American sweeties are so different
from any we get here. Gillie said they smell of Canada, where my sister lived
for 12 years, and she's right. Emily thinks they are yummy and she is keeping
most of them until Chris gets home from Summer Camp so she can share the
All our love Frankie, I can't tell
you how wonderful it is to know you and our Angel family, love, Steph and
Emily and family.
Emily got an
Award for Courage when she was 5, just over a
year after she had fallen ill. She is with her special cousins Roisin and
Siobhan. Also in the picture is the Prime Minister (Taoiseach) of Ireland and
some TV and pop stars!
Back TO EARTH BOUND ANGELS
Post A Message for Emily or Her Mum
Emily will celebrate her 8th birthday on
In just a few weeks she will undergo
surgery to remove her legs. We will all be praying.
If you would like to send Emily a
birthday message send to Frankie @
Happy Birthday Emily Notes
Dear Darling Emily, we are so happy to have you and
your family become part of ours. Our hearts, prayers and love will reach across
the sea to love you all. God keep you safe and may you only know His Love and
Grace thorough all the days of your life. Frankie, HBA Ryan's mom
go girl!!! You are the most incredible 8 year old I've ever heard of. I am
soooo happy and proud to have you and your Mum a part of Meningitis Angels.
Always remember Sweetie, God is with you and He will NEVER leave you side. You
are definitely one of His amazing angels!!!
I send you ALL my LOVE & PRAYERS!
Faithful Daughter Lana
HBA Gina's Daughter
my Sweet Steph,
We are sending prayers across the ocean to these sweet
How hard it is to hear more sweet children have to go
through this nightmare.
I am asking God to place angels all around Emily and
this precious baby to heal them and give you all peace of spirit.
Please keep us posted.
To Christ Love I add mine, Frankie
I was reading your post regarding Emily. Please know
Emily, you, and your family are in my prayers.
On Emily form her MUM
This is the outcome of our orthopedic appointment
yesterday. For the first time since the winter of 2000, the doctors are asking
us to consider below knee amputation of both legs. They think that Emily
could walk quite soon on double prostheses but that the chances of her
walking on the remains of her legs will not be established until after the
next 8 years of extensive surgery. Even then she will be doing well to have feet
at 90 degrees to her legs and no movement. Obviously with prostheses there is a
joint at the ankle and the
potential for better gait. Much fewer and more minor surgeries, to revise the
stumps about yearly. Pretty shoes, legs that look like legs... I have to tell
you that this is an agonizing choice. We have discussed it as a possibility ever
since her illness because you couldn't look at Emily's legs and not think of
amputation. But she
LOVES her little feet and is so proud of them because they 'beat meningitis'
even though they are so deformed. Her immediate response was to say no with all
her might. We are going to go into various appointments to meet the prosthetic
team and the surgeons all just to discuss the possibility. I'd like Emily to
meet some other child
amputees, especially double amputees if possible. She needs to know what to
expect. Cognitively she is like age 5 rather than 7 but she is still able to
think about this and take it all in. Is there anyone
on the Angels site who has had a double or single amputation?? We would like to
make contact. If they'd done this in 2000 there would have been no decision for
US to make or to impose on a fully aware
little girl. I have to say I feel sick. They are offering us walking, but at
what cost. And what if she doesn't manage to go all the way to
independent walking afterwards? That's all for now, thank
God I found this site BEFORE all this cut loose, Steph.
my heart and prayers go out to you and Emily. She is so
young. My sister suffered from meningitis and it left her with numerous
handicaps. I have cried on a daily basis for her. Sherry is 34 years old. I
just can't imagine what it must be like for you. the emotional impact this has
on ones family is so overwhelming. please take care of yourself . take a break
when it is offered to you. we will be praying for your family. god bless you
Sherry's web page
check out this girls web page she has below the knee
Dear Steph and Emily,
Please forgive me for not writing sooner, as we have be
trying to meet dead lines on paper work, doctors appts, Ect.... My heart
aches for you both as I know the intense feeling of making choices that will
affect the rest of your life... GOD will show you the way- " I'm praying to
our Father in heaven to hold your hand and to give you the strength to see and
hear from other children who have had the same journey in their lives. I pray
that Emily sees children who may be a bit different, but have continued to be
strong, happy and full of life.. I pray that Emily and her families fear is
put in our Lords hands and released completely. And I pray that Emily and her
family continues to receive the love and support to face each new day...
Steph- Please know we are praying everyday for your
family.... I will write you soon,
I LOVE YOU ALL
Lori Lynn Rowland
Dearest Steph , My heart screams for our precious Emily and this latest set
back.. Please know that our hearts and prayers are with you and you know what
ever decision you all make will be right because it is made out of total love.
God keep you strong and angels to stand beside you. Love Frankie
you all for your messages, it is so good to know we are not
alone. We are feeling a bit steadier now, we have a plan, including
meeting other child amputees from meningitis, and I've been in touch
with the Amputees Coalition of America, who have much information.
We still don't know what to decide, except just to gather as much
information as possible. Emily is still very against the idea but
when we meet Cassandra (6) on Friday, her Mum says she's going to be
wearing her roller-blades! Very persuasive. Thank you all again..
this will be a long process, thank you for your prayers, I feel I
can't trust my sense to guide me right, so I've got to fight for
faith to believe we can make the best possible choice for and WITH
Emily. Love to you all, Steph.
You know I'm praying, as I know you understand the no
time to reply... I'm reading again
( now that I bought my dollar store reading glasses-
HAHA) Please be care with the lightning speed reflexes- That's why my back is
out again.. BUT I CAUGHT JENA!!! Yeah!!!
I try to stay awake long enough to write replies, but I
just can't do it... My body is begging for sleep... I love Ya, Miss Ya, and
I'm praying for you and your family.
Lori Lynn Rowland
May your birthday be blessed with many good things.God
.With all our love Demis, Carmen