Downright Perfect - Neive's Story: Part 2

Neive was in and out of hospital all the way up until her open heart surgery at 4 months old. We handed over our precious princess to the surgeon, not knowing if she would come back to us and it was the toughest day of our lives. But it was also the best day too, as Neive has done so well since the surgery and the change has been remarkable.  All we can do is hope she will not need further surgery as she grows.

Neive is an amazing little girl, she laughs, she cries, she is stubborn and cheeky. She has the most contagious smile, she never complains and has the ability to light up the whole room when she enters. Neive's 5 year old sister Anya and 3 year old brother Isaac absolutely adore her, and just like any siblings, are fiercely protective of her! They still have the beautiful childhood innocence whereby they do not see her as any different to any other child and it’s lovely to see absolute acceptance and equality. I am amazingly proud of them all.

Although Neive’s siblings have accepted their sister completely, they do not see nor do they understand the Down’s Syndrome, despite me trying to explain it to them. Anya calls it “Dan’s Syndrome”, much to everyone’s amusement! She has also asked if she or others in the family have it. This will be something we have to explain again and again to them as they grow up.

They’ve already started to question why Neive can’t do certain things, and as she is getting older the Down’s Syndrome is becoming more obvious.

I am very thankful to have met some truly amazing families and inspirational children since having Neive and am continually amazed by the children’s strength and bravery. It’s truly humbling to be part of both the Down’s syndrome community and also our extended heart family. I have made some lifelong friends and their continued support and advice is invaluable. 

We are very lucky to have the support of a fantastic local charity called “Downright Perfect” which has been a lifeline for us as a family. I’ve now become a trustee of the charity and in the last year we’ve raised money to fund group therapies for the children. We’ve also launched a project called “Bags of Hope”.

Our Bags of Hope are given to new families with a baby born with Down’s Syndrome. Their aim is to provide positives following a Down’s Syndrome diagnosis, as well as helpful up to date information and support. Currently these Bags are provided to all Dorset maternity units / midwives, but our long term aim is to provide them countywide.

The Bags of Hope contain our group information, including contact details for a local outreach worker who can visit families at home of in hospital to offer support and advice from their own experience. The Bags of Hope also contain some useful essentials for the baby and some little token items for the parents, including some lovely Pretty Little Polka Dot dribble bibs!

From our own experiences in hospital following a Down’s Syndrome diagnosis, whereby we were given little or no useful help or advice, we felt incredibly isolated and alone. We want to ensure no other families are in that position; these Bags of Hope mean those families have the information of where to turn and who to contact.

The future of the charity is looking great. We have wonderful support from parents in the group, and I feel that together we will make a difference.  This year we hope to be able to fund 1:1 therapy for the children, and in the future we want to provide a respite service and have our own premises to provide the early intervention we believe the children need.

To carry out this amazing work, we rely solely on fund raising and donations. We have some lovely people running marathons and jumping out of plane for us this year, as well as some keen knitters and crafters making baby bits for the Bags of Hope.

If you fancy doing something crazy and help us raise some money, we would love to hear from you, please email me at clarefrankland@downrightperfect.org.  If you’d like to donate you can do so by texting : DRPT21 £3 (or any amount) to 70070. Your donations really do make such a difference.

Initially, having a baby with Down’s Syndrome is terrifying and I still have moments where I fear for what the future holds. However, Neive has brought so much joy and love to all our lives and has opened our eyes to a whole new world. She has taught us all to take nothing for granted, treasure each day and celebrate the little things, because when you look back you realise they were big things. With the support from Downright Perfect, and parents that have walked in my shoes, I realise Neive can, and will, achieve anything she wants to.

We love Neive unconditionally and wouldn’t have her any other way! 

Clare x

 


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