Emily M 's quilt    (Quilt Closed)

Theme details

Nursery Rhymes/Emergency Vehicles/Animals - Some nursery rhymes, Some animals (lorikeets and lions and monkeys) and some emergency vehicles

Child Interests

Emily's first love is music, she sings all the time and knows literally every nursery rhyme. She will also sing songs from West End musicals and loves any musical instruments especially her guitar. Being blind Emily doesn't understand colours although she can name them. She has light perception so we know she reacts to bright lights like fireworks and neon lights and sunlight.

Emily is like most toddlers and will listen to typical toddler tv like CBeebies Mr Tumble, Bing the rabbit or Disney for hours! She loves any toy that can make a noise but dislikes soft toys as they have no reaction for her but she does have her 2 favourite comforters at bedtime. She loves blankets!

Emily enjoys being outside with all the sounds around her, she loves going to the zoo to hear all the different animal sounds, she likes rides that give her different sensations.
Emily is a loving little girl, she loves to be cuddled and held and is loved by so many people in her big extended family. She loves swimming and going to the park to go on swings and walks along the seafront. She loves balloons. Emily is also very attached to her dummies ! Emily likes emergency service vehicles as their alarm noises are amazing to her, she can tell the difference between fire engines, police and ambulances!

Biography

Emily was diagnosed pre-birth with severe heart problems and her birth mum was informed Emily would not live for long. She was rushed to GOSH for major heart surgery the day after birth. While at GOSH she had further surgery to try to repair the damage to her heart but also suffered setbacks due to infections. At GOSH Emily's other problems were discovered including her blindness. These are all signs of a possible genetic disorder called Fraser syndrome but her birth mum does not wish to find out.

When Emily was 3 months she became very poorly and it was clear nothing more could be done for her and to transfer her back to our local hospital for respite care. Emily was given a few days left.

This is where I come in to her story. Emily is not my bio child she is my cousins daughter. I began to visit Emily in the hospital so that she wouldn't be alone. Her birth mum was finding it difficult to be with Emily and could not stay with her. Emily grew stronger and as the hospital were not actively treating her agreed that Emily needed to go home to live her remaining days with family. Unfortunately my cousin could not face taking Emily home and so social services were involved to place Emily into care. I had grown to love this little fragile girl who just needed love. I was in a position to offer Emily a home for however long she had. I was trained up in her care and given the support needed to bring Emily home with me. In August 2017 Emily left the hospital with me and somehow has miraculously made it to this time.

I am under no illusions that her life will be short and I live day to day knowing it could be her last but Emily has changed my life forever and for the better. She has made my dark days light and fills me with such joy and love. I am her forever mamma and she is my amazing little tubie warrior. I gained legal guardianship of Emily in 2018. My children love her as their little sister.

Since being with me Emily has had further operations which did not work as well and therefore GOSH have said her heart is too unstable to withstand any more. She has suffered many many infections that have resulted in hospital admissions with several " is this it" moments, but each and every time she fights back. Emily has her own agenda, she wants to explore the world and leave her mark. Emily is loved by so many people and has brought our family together.

I wish you could all meet her. Emily is a beautiful little girl who has so much to give.

Patterns

Squares received