Alisha's Story

The following text was written for the original On Yer Bikes site, on 16th July 2001, not long after we had received Alisha's diagnosis of Spinal Muscular Atrophy.

Birth

Alisha 3 Hours

Alisha, 3 hours old

When Alisha was born on the 9th March after a long labour in Poole Hospital we were as overjoyed as any new parents could be. She was perfect in every way and the most beautiful baby we had ever seen. Over the next few weeks, we got used to being new parents and we started to dream of our future together as a family.

We had been lucky in that some of our close friends had also become parents shortly beforehand. It was great when we got together to see what our little angel would be getting up to in a few weeks' time.

Doubts

Alisha didn't seem to be quite as physically active as our friends' babies had been at the same age, but she was very alert and more vocal. We knew that every baby develops differently so we weren't too worried. However, as time went by, we became more concerned.

Our concern was echoed by our GP when Alisha had a check up at 10 weeks. He referred us to a paediatrician. The paediatrician saw us soon afterwards. She suspected a problem with Alisha's nerves and arranged a blood test.

Diagnosis

Whilst we waited for the results, we tried not to worry or to second guess what Alisha's condition might be. This was a very difficult and worrying time for us. We thought that if anything was wrong it could soon be sorted out, or at the worst we would learn to live with Alisha having some kind of disability.

On May 29th, less than 2 weeks after the blood test, we were given the devastating news that Alisha had Severe SMA (Spinal Muscular Atrophy) and she was very unlikely to live to see her second birthday. We'd never heard of SMA before and, with no treatment available, this condition was going to take away our precious baby daughter. When we discovered that 80% of babies with this condition don't even see their first birthday, our world of dreams just fell apart.

About SMA

Please visit the JTSMA web site to find out more about the Spinal Muscular Atrophy.

Caring for Alisha

Alisha in the bath

Alisha, loving it!

Alisha is very weak and we have had to find toys for her that are very light and easy to play with. Feeding times are frequent and often become more difficult as she gets tired towards the end of the day.

Alisha remains the happy baby she has always been and she is very generous with her smiles. She loves her baths and finds the water supports her limbs enough that she can really move around and this is a joy to behold.

Alisha Smiling

Alisha's Big Smile

We know we don't have long with Alisha, but we want to be able to look back and say that we gave her the best we possibly could.

The Future

Nothing is easy now and we know that we will have to live with this loss for the rest of our lives. Family, friends and health professionals have given us the best support we could hope for. Alisha will always be with us.

We're telling our story to make people aware of this little known condition. We want to help Chris raise as much money as possible for the JTSMA so that they can continue the excellent work they do. Other families like ours need support. We hope that one day they will find a treatment to cure the condition so that other babies as precious as Alisha will be saved. Please help in any way you can to save other families from the pain that we are going through.

Thank You

We would like to thank everyone who is helping in this fundraising effort, especially Chris and Karen who have put so much of their time and effort into this, and to Mike of CREAM who has created this fantastic web site.

Harry, Carol and Alisha Tansey

16th July 2001

 

Post Script

Alisha passed away on the 1st October 2001, aged 6 months and 22 days. She died peacefully and without suffering, shortly after returning home from a short stay in hospital. She is greatly missed by all her family, friends and everyone who saw her radiant smile.

Alisha's grandmother, Sue, composed the following poem which was among those read at the funeral:

She came in springtime and the wild
Primroses thronged to meet
A child who most resembled them -
Small, beautiful and sweet.

She grew in love and laughter,
Loved happy faces, trees,
Noisy pubs and nappy changes,
And smiles, and more smiles, please.

Colin, her caterpillar,
Her pleasures, they were rife
Crammed all experiences into
Her six short months of life.

Last hours of life, tubed, on her side.
Were pleasures all too few?
Alisha smiled and "A-a",
And laughed at Peek-a-Boo.

She even softened Death, who said,
"She'll not meet hurt or harm."
He took her pain-and-fearlessly,
At home, in loving arms.

The children say she's in the clouds,
Or the most shining star of night.
In heaven? Or where anything
Is beautiful and bright.

Our child of spring and summer's gone
And we must Winter on awhile,
But through our loss we'll treasure still,
Alisha's radiant smile.


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