Who is Alyssa Hannaford?

John · Posted: Mon Oct 10, 2005 8:55 pm Post subject: Who is Alyssa Hannaford?

For those of you who don't know, Alyssa Hannaford is my daughter. Alyssa had Angelman Syndrome and sadly passed away in September 2003. She was 14 years old. This forum was created in memory of her and is dedicated to her and the AS community in general.

Really, Alyssa was a joy to have in her short 14 years and we felt that we were privileged to have been blessed with such a beautiful little girl! There was however some grief as you all here would be aware of, such as missing the normal milestones and not being able to hold a normal conversation with your child. Then there was the many times when she hurt herself and was sick, which was more often than with a "normal" child and also the times when you just can't cope anymore, it all just seems too much. Sometimes though, I thought she was saner than anyone I knew. She saw the joy in life, loved the simple things and had no fear of rejection as "normal" people often do.

Alyssa was 14 years old and had Angelman Syndrome (clinical). She also had uncontrolled epilepsy (which is a part of the syndrome) and was in and out of hospital to try and control it for about 3 months before she left us. The seizures were becoming more frequent as time went on. During some of the tests it was found that she had a progressive metabolic disorder, which caused an increase in the amount of seizures. Because of the amount of drugs they were giving her to reduce the seizures, her immune system was severely compromised (probably due to the steroids she was put on as a last resort to control her epilepsy) and she caught a hospital air-born bug. Within a few days she had developed pneumonia and died peacefully from respiratory arrest (she was administered morphine to reduce the pain).

Alyssa left us to be with Jesus on the 16th of September 2003. She is in heaven now with Jesus, full of joy and happiness and there is no more sickness and suffering as there was in her short life here on earth ("And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Behold I make all things new, saith the Lord": Rev. 21:5). We think about her every day. Loosing her is sometimes too great to bear and we miss her greatly, but because of our faith in God, we know we will see her again in Heaven and knowing this helps us to get through.

Please note: Although Alyssa’s epilepsy was very bad (as is the case with many AS people), it is not normal for a child with Angelman Syndrome to die prematurely. “The condition is permanent but is not degenerative. AS children can look forward to a normal lifespan.” http://www.angelmansyndrome.org/cure.html
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Alyssa’s Eulogy as told by Robynne Hannaford (Alyssa’s Mum)

Alyssa was born at Nambour General Hospital on 8th July 1989. She was a beautiful baby girl with blue eyes black hair, fair skin and a broad smile.

We had a baby girl I could lovingly make clothes for and John was over the moon he had his beautiful daughter.

Alyssa was a contented baby as long as she was in someone’s arms. We had many little problems such as feeding and reflux, but of course being our first, it was a big learning curve for both of us.

I would take Alyssa to weekly clinic with my sister Chrissie whose son was three weeks younger. Alyssa had problems by not gaining weight and I was keen to breast-feed her, but after a while I was encouraged to put her on the bottle. She slowly made weight gains after this. My Father reckoned that she needed a bloody good feed. During this time we were staying with friends and their daughter nicknamed her bones.

John and I moved back to Nambour from the Coast in 1990 and at this time I was concerned that she was not reaching the usual milestones. After consulting with the maternal child health clinic, I realized that I had reason for concern.

Alyssa could not roll over or sit up without assistance. She had no speech and could not bring her hands to midline to hold a cup or clap her hands. This was the beginning of our journey into understanding disabilities.

Alyssa had many genetic tests, which all drew a blank. She was considered “triple-non", meaning that she was non-deletion, non-UPD and had no imprinting defect, as was found from both the FISH and methylation tests she had, but she was never tested for the UBE3A mutation. See: http://asclepius.com/angel/summary.html

We attended Physio at the hospital, which is where I met up with a work colleague whose son also had a disability. We have developed a very close relationship and are giving each other much support. I recall an incident where she asked me to accompany her to a workshop regarding disabilities. During this workshop, I spoke to the social worker who told me that I was eligible for a payment through Centre Link, however, by accepting this payment, I felt that I was accepting that she had a disability. Around this time, we joined special education development center and shortly after, Alyssa started attending the children’s therapy center. She also attended occasional childcare and Suncity Child Care, during the times that I worked. This gave us contact with other families and we have a very close relationship with many of these people today.

The therapist used many varied tactics, e.g. shaving cream, water play, music, wet spaghetti, finger painting and mousse. Many of these tactics overflowed into the household and consequently we lost bottles of shampoo and various liquids down the sink. I recall an instant on a hot day when Nathaniel had left out a two-litre bottle of cordial. Lissy had managed to get it on the floor and get the top off. She was having a whale of a time swimming and swishing her little hands around. I wasn’t quite sure where to even begin to clean her up.

Having Nathaniel (her 2 year younger sibling) helped with Alyssa’s therapy. He was walking at 8 and ½ months old. Alyssa tried her best to keep up. He taught her how to climb over furniture and the like. I recall having our neigbour call us early one morning only to tell us that Alyssa had one leg out the window. That was the beginning of Lissy proofing the house, although she often found ways around these barriers. An example of this was that when Lissy was ready for school I decided to take a quick shower, the next thing I heard was John screaming at the top of his voice, telling me that Lissy had fallen over the balcony. She had tried to climb over the gate and had overbalanced resulting in a fractured leg.

There were to be many accidents from time to time, resulting in many traumas and visits to the hospital. Once she lost her permanent front teeth. I was extremely devastated.

Another example of Alyssa’s jaunts was when she went missing at my sister’s place it would have been almost ¾ of an hour before we finally found her, she had slipped through a screen door across a busy road and was finally found in a storm water drain, just on dark. She was in her element, having a lovely time splashing in the storm water. I can tell you, I was beside myself. There were many what-ifs, but as always we tried to keep the humour in everything. So as the saying goes in our household, if you wanted to find water, just call on Lissy.

When she was four years old, the neurologist told us that he was pretty sure she had a condition called Angelman Syndrome. These children are extremely happy, have little or no speech, and have a jerky, unsteady gait. They have a fascination for water, an infectious laugh and are very loving. Epilepsy is a major medical concern. This was to become a major health issue for Lissy.

At about six years of age she commenced her medication. I suppose we never got on top of the seizures. There were many changes to the medications and higher doses were required to control them. It was alarming to watch her go through them.

Throughout her life we tried to maintain a close-knit family with social outings, church, beach, traveling interstate to conferences with her, even camping. Alyssa loved attending Nambour Special School, where she made many friends with students and teachers alike. Alyssa had a real joy for life, her laughter and her eyes would sparkle and her mischievous nature shone through. Her laughter was infectious and I found it wonderful to observe life through her eyes.

Because of her condition we became know medical staff on a first name basis. Alyssa was able say two words, Mum and Dad. She used to tease her dad by saying Mum, Mum. John would say, what about Dad and she would say Mum, Mum and he would walk away and then she would say Dad, Dad, over her shoulder. She loved pressing the call button in Hospital and have the nurses come running. She would then laugh and pretend it wasn’t her.

Her Father often called her his princess, because of the way she responded. Even though she had little speech, she made many friends with her affectionate laughter, her smiles and her warm love. She grabbed hold of life and ran with it. As parents there were many times that were tough, but there was also lots of joy. Alyssa taught us to enjoy the small pleasures and achievements.

In the last two years of her life, as much as we did not want to admit it, Alyssa’s health began to decline. She was using her wheelchair a majority of the time. She required lots of medical treatment and hospitalization. We became familiar with the ambulance, blue care, and Nambour and Mater Hospital staff. Over the last five months of her life, Alyssa was mostly in the Mater Hospital in Brisbane to stablise seizures, which were extremely difficult to control. Alyssa developed Pneumonia at this time, which, even with her strong will, was not able to overcome. She passed away peacefully on Tuesday evening the 16th of September 2003. Her love, joy, laughter and smiles, will live on in our hearts.

Through Jesus our Lord, our little angel helped to teach us to face adversity with strength and courage.

We now celebrate her life, knowing that she is now free from her disability and is with her Lord in Heaven.
_________________
John Hannaford, husband to Robynne & father to Nathaniel (17) &
Alyssa (clinical AS - 8/07/89 to 16/09/03 - 14 yo)
Nambour, QLD, Australia.

Jolena · Guest

Our family can relate to many things you wrote about Alyssa. May God continue to comfort you as you grieve the loss of your precious little girl.

sweethealings · Guest

Your story has touched my heart. My beatiful Grand daughter has AS. Her smile is so very bright and she is so loving. She will be 3 in Febuary. Her young Mother has worked so hard teaching her so much already. She calls her, her best friend. Thank you for sharing your story.

Guest · Posted: Mon Nov 14, 2005 12:27 pm Post subject: Alyssa

I am so sorry for your loss. Our lil angels are so precious! the people blessed to meet them are touched for life. They are definately a gift & a hair pulling experience (no pun intended). Thank you for this forum to educate, comfort, & lead us throughout this journey. Wink

Hugs to you and your family,
Renae & Kelsey 9 del+
www.geocities.com/angelmanrus/home.html

Guest · Posted: Tue Nov 15, 2005 5:20 pm Post subject:

John
Can I say what an incredible job you've done setting up this site it really is fantastic. I've learned so much from reading it.

Alyssa sounds like she was a delightful girl and I can't begin to imagine how painful her loss must be for your family. You are in my prayers. I thank you for sharing your story as it was so inspiring for me to read. I could 'feel' the abundance of love and joy generated in your family. What wonderful family for Alyssa to be a part of.

I feel I owe you an apology for not replying to this post first time I read it but I was so overwhelmed when I read that Alyssa had died. At the time my dd was on mega doses of steroids as a last resort to control severe epilepsy so it was all a bit close to home for me.

Thanks again for setting up this site.

Cheers
Siobhan

John · Posted: Wed Nov 16, 2005 11:46 am Post subject: Thank you!

Dear Jolena, sweethealings, Renae and Siobhan,
Thank you for your condolences, your thoughts and your prayers. I only hope that this forum can be of some help to others in their time of need and also to be used just to "catch up" and chat with others socially in our Angelman family.

Siobhan, you don't owe me anything. I understand perfectly where you are coming from. I hope and pray that your dd comes through with flying colours!

I wish you all, all the very best in your journey with your Angels Very Happy

"Be joyful in hope, patient in affliction and faithful in prayer." Romans 12:12
_________________
John Hannaford, husband to Robynne & father to Nathaniel (17) &
Alyssa (clinical AS - 8/07/89 to 16/09/03 - 14 yo)
Nambour, QLD, Australia.

mysweetangel · 100+ Posts = Platinum Joined: 01 Jan 2006 Posts: 140

John and family I am so sorry for your loss of your beautiful angel Alyssa. I am new to this forum and am slowly reading all the posts. My heart really does go out to you and your family. I work for people with all sorts of disabilities. Sam my special boy whom I started with at 18 months died when he was only 9 years. He had CP and it was devestating for everyone, he was not sick and always full of life and lots of smiles. I hope above all hope that he is up in heaven with Alyssa, being cheeky to all of gods angels.
Thank you John for this forum.
Dave and Kim

John · Posted: Tue Jan 10, 2006 10:47 pm Post subject:

Dear Dave & Kim,
Thank you for your kind words. I am sorry about Sam and I am sure that he is up there in heaven with Lissy and having heaps of fun with our loving heavenly Father!

I am encouraged by the way people are reaching out to each other here with their warm loving care! Very Happy

Thank you for your participation!
_________________
John Hannaford, husband to Robynne & father to Nathaniel (17) &
Alyssa (clinical AS - 8/07/89 to 16/09/03 - 14 yo)
Nambour, QLD, Australia.

taylorgracesmama · Joined: 26 Jan 2006 Posts: 6 Location: Western Kentucky

Dear John & Family:
I have recentily joined your forum. I was brought to tears reading what you wrote and that of your wife's about your daughter, Alyssa. My heart truly goes out to you and your family. I will forever keep you and your family in my prayers from this day forward.

I would like to add this, I truly thank you for sharing all you have in this forum for parents of AS children. I have just recently been told my three year old daughter, Taylor Grace, has AS. I have so many questions, so many fears, and so much to learn. I look forward to staying active in your forum and learning all I can.

Sincerly,
Debbie

John · Posted: Mon Jan 30, 2006 10:53 am Post subject:

Dear Debbie,
Thank you for your kind words and your prayers. It's people like you that make the forum, so your input is much appreciated by all.

I wish you all the very best with your little Angel Taylor Grace. I know she will give you much joy. The road will be tough at times, but the joy is much greater! Wink

Warmest wishes,

~John

foresteph · Posted: Mon Feb 06, 2006 3:41 pm Post subject: Sorry for your loss

Dear John and Family
I am so sorry for your loss.I can only imagine how hard it has been for you guys.It really hits home with me,as my Brady has really battled dangerous,uncontollable seizures since he was a tiny 8mth old.My heart just breaks into peices thinking about what your family has gone through.
Also I wanted to say thank you for continuing to reach out to others and help educate them.Your family has to be very special and we are lucky to have you in the Angelman community.Thanks so much.
stephanie mom to brady 3yrs,del,and peyton 7yrs

mamadawny · Posted: Fri Mar 10, 2006 3:55 pm Post subject:

John,
it doesn't matter how many times I read about your Alyssa, it makes me cry. I really feel your loss. There has been many times I was afraid we would lose our Angel Maegan when her seizures were out of control. How sad for Alyssa to make it through the constant seizures only to be taken by an airborn bug. In the pictures I have seen of her, you can tell how lively and fun she must have been. You can tell by the sparkle in her eyes how strong she was. How wonderful it will be, on the day you see her again that she will be able to tell you everything she couldn't tell you here on earth. Although if Alyssa was like Maegan, she didn't have to speak for you to know how truely loved you were. God Bless you and your family, and thanks for making this forum possible for us all.
_________________
Dawn
Mom to 5 year old Angel Maegan,
2 year old Gabriel and 2 year old Delaney

hevans · Joined: 13 Apr 2006 Posts: 7 Location: Martinsburg, WV

Dear John,

I just joined the forum today, received your email with my login and began by reading this first post about Lissy. I can't stop the tears from flowing, mostly because I of the joy I feel knowing she is with the Lord and free from her disability. My son Chance is 3 1/2 and so far we have not received a formal diagnosis, but my husband and I just "know" that he has Angelmans. We have visited Kennedy Krieger and Johns Hopkins several times and go again in May for more genetics testing.

I smiled at the stories of "Lissy-proofing" your home. That is so our life right now. Somedays I wonder how I can go on, but we have found a fantastic church home that has embrassed Chance and our family and we continue to turn it all over to the Lord for the strength to get through each day. Chance is our blessing.

This forum is absolutely the best thing I've come across since we were told over a year ago that Chance could possibly have Angelmans. Thank you for doing this for us. I can't wait to read on.

God bless you.
Heather

freshflowers · Posted: Fri Apr 14, 2006 1:18 am Post subject: Response

I am new to this forum. I read about your daughter. I am deeply sorry for your loss. She is with God now and is not suffering any longer. I know you will always think of her each and everyday and never forget her. Always try to focus on the wonderful joy she brought to your life.
Having an Angel is a huge challenging but very rewarding and joyful. I would not trade mine for anything in the world.

Take care,

Jodi

John · Posted: Fri Apr 14, 2006 8:42 am Post subject: Thank you

Dear Steph, Dawn, Heather & Jodie,
Thank you all for your loving and kind words. It makes it easier to know that you are here for me and I hope and pray that you all are helped by this forum.

Warm wishes,

~John.

MonaFromSweden · Posted: Fri May 12, 2006 4:15 am Post subject:

Hello John!
I just wanted to say that I have read your story about your daughter. I am so sorry for your loss...
And a big thank you for making this forum, it´s worth a lot!!!

// Mona
_________________
26 year old mom, with Lilja, 2 years old.
Blood test came out neg but I feel like I could belong here anyway...

jujube · Posted: Tue May 29, 2007 1:49 am Post subject: Thank you

Dear John and family...

I was so touched to read about your daughter. What amazing love and faith you have. Thank you so much for setting up this site in her memory. We just received a diagnosis of AS last week, and it is such a comfort to know that we are not alone in the spectrum of emotions that we are feeling right now. We will send some prayers heavenward on behalf of you and Alyssa and your family! Thank you again!
_________________
Julie, mom to Sophia, 2

melon · Posted: Fri Oct 31, 2008 9:22 am Post subject:

I am new to this forum. I read about your angel Alyssa. I am so sorry for your loss. Thank You for this forum, the place where angels land from around the world. Wish You all the best.

mona555 · Posted: Sun Nov 16, 2008 6:58 am Post subject:

Dear John,

I just wanted to let you know that this is a great website and have been a tremendous support for me. I have read Alyssa's story, you are so courageous and giving.
My sister, sana 24 yrs old angel, has been in the hospital for 45 days now. She entered because of pneumonia. They give her a high dose of antibiotic, she recovers for 2 days then the pneumonia gets back. they said that her immunity system is weak cos she lost so much weight and that being in the hospital is making her contract pneumonia over and over again. It has been a desparate time for my family, I went to Lebanon for 15 days to be with my sister, honestly, I was worried that she will leave without me saying good bye to her.
Well I just want to say that I hope you and your family are doing well.... I hope time makes us see the reason why the purest people of all, our angels, have to suffer.
Thank you for everything
Mona

rainasmommy · Joined: 07 Apr 2009 Posts: 5 Location: Kentucky

First, I'd like to thank you for adding Raina to this board. It really means alot to me. I've been wanting to become active again on this and on the listserve, it's just been so hard. It seems I always end up crying reading about our angels, as I am now. But it's so hard to deal with and accept the fact that Raina is gone. I can really say I understand what it means to lose a baby. I am very sorry to all that have lost their precious Angels. I also commend you and others for being so strong. I'm sure Alyssa is soo proud of her mommy and daddy for keeping her alive in everyone;s hearts and to keep teaching and supporting others. We are all truly blessed to have had the chance to meet and care for our Angels, no matter how much time God allowed us to have with them. Our lives are changed forever. God Bless you!