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 plan!
 
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 treat.
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. 

 

                                                                             Angel1f 

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      Meningitis Information    Post A Message for Emily or Her Mum

            

Emily will celebrate her 8th birthday on July 31.

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 @ fmilley@ail.com   

 Read Happy Birthday Emily Notes

 

 

                  Angel2h                Angel2h      To Emily          Angel2h              Angel2h

       Angel2h                                    Angel2h                                  Angel2h                  Angel2h 

 

Angel2h  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

Emily,

Angel2hYou 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

 

Angel2hOh my Sweet Steph,
We are sending prayers across the ocean to these sweet angels.
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
Angel2hHi Stephanie,
 
I was reading your post regarding Emily.  Please know Emily, you, and your family are in my prayers. 

Angel2hUPDATE 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.


 

Angel2hDear 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 all
Sherry's web page
http://www.tbihome.org/gallery/trev_rrt/index.html
check out this girls web page she has below the knee  amputation
http://meningitis-angels.org/lindseyeb.htm
 
Angel2hMy 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


Angel2hMy 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

Angel2hThank 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.

Angel2h

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
Angel2hHappy Birthday
May your birthday be blessed with many good things.God bless you.
 .With all our love Demis, Carmen

Angel2h

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