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Sponsor a Family Support Worker at Rainbow Trust

Rainbow Trust Children’s Charity is a charity that provides emotional and practical support for families who have sick children. As a parent, I cannot even begin to imagine what it’s like to be told that your child has a life-threatening or terminal illness but I can imagine you would want as much as much support as possible.

Sponsor a Family Support Worker at Rainbow Trust

The children’s charity has recently launched a new campaign “Sponsor a Family Support Worker” which gives a deeper insight into what families with terminally ill children face daily and how the support of Rainbow Trust makes a difference to theirs lives.

Here, Hope Matthews’ family shares their story:

After their son, Sam, died at just 16 hours old, Caroline Matthews and husband, Chris, were devastated. Yet a year later when their daughter, Hope, was born, the parents were faced with more heartbreak as Hope saw an uncertain future.  

“When I was 20 weeks pregnant with our son, Sam, we were told he had a diaphragmatic hernia and that he only had a 30% chance of survival. Even though we did everything we could for little Sam, he died on Christmas Day after 16 hours of precious life.

We were still in the deepest depths of grief when my husband, Chris, and I found out I was pregnant with Hope four months later. She was doing really well until 12 weeks but we then found out she had excess fluid on her brain and an MRI scan at 21 weeks showed that our baby would have severe difficulties with walking and talking. After everything we had been through with Sam it was devastating news.

Our Hope, or ‘Honk’ as we call her, was born at 37 weeks and the first signs of trouble started straight away when she went blue as she was feeding. Doctors told us she wouldn’t be able to suck so she had choked on the milk. Yet within two days I was breastfeeding her – she was already showing people that she was out to defy all the odds. However, we still didn’t know the full extent of her disabilities.

Up until the age of 12 weeks, she was doing fine, rolling around and gurgling like a normal baby. She then started making jumpy movements; I knew they were seizures. In just ten days she was having around 200 seizures a day. The hospital diagnosed her and started treatment on the same day for infantile spasms, otherwise known as ‘a catastrophic form of epilepsy’.  Hope was in a constant epileptic state; the drugs robbed her of her smiley and charming personality, along with her sight. It felt like a second child of ours was slipping away from us.”

Chasing Rainbows

“In July 2009, when our little Hope was six months old, she was diagnosed at last with a mitochondrial disorder, a disorder of DNA. As the seizures continued her caring needs grew and it left me less time to spend with my daughter, Jordan, or son, Max. I couldn’t bear to leave Hope, even for an instant. As our family carried on, not knowing how long we could keep going, Hope’s epilepsy and disability nurse referred us to Rainbow Trust – the very next day I met Family Support Worker, Sara, and everything changed.

She is wonderful! Sara is an extra pair of hands and a huge support to me. We all find it hard to share her when she visits! I have time to get on with the housework while Sara and Hope sing ‘Row your boat’ in between giggles, she spends time with my other children and she is great morale support at Hope’s many hospital appointments when Chris can’t come with me.  Knowing that Hope was in Sara’s safe hands I was able to go swimming with Jordan and Max and focus completely on them. 

In December 2009 Hope’s seizures stopped. First, it was one day without a seizure, then two, then a week and to this day she hasn’t had one again so we’re reducing the dosage of her medicines. Although her vision is still impaired, I can tell something is happening behind her eyes as she responds to lights. We see Sara every week and I know that she’s always at the end of the phone if I need her. 

I used to call it ‘chasing rainbows’ trying to keep up with Hope’s needs and the daily chores, I couldn’t get anything done and didn’t feel like I was being a good Mum to any of my children.  With Sara’s help, it now feels like I’m being chased by Rainbow with the many offers of support! It’s wonderful!”

As Hope improved, Sara’s support lessened and eventually the family felt they could cope on their own. Sadly, Hope’s condition worsened after a short period and the family contacted Rainbow Trust again for support. Amelia began supporting Hope and her family in August 2015.

Rainbow Trust Family Support Worker Amelia with Hope

Rainbow Trust Children’s Charity currently supports almost 2,000 families but there are more that need this help and support. In order to do this, they need funding to be able to fund more Family Support Workers.

If you would like to help, you can sponsor a Family Support Worker for just £3 a month and help children just like Hope.

Rainbow Trust Children's Charity

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About The Author

Picture of Maria
Hello and welcome to Suburban Mum! I'm Maria and I'm mum to two boys - E who's 14 and M who's 11. This blog is about my family, the ups and downs of being a working mum and everything in between. If you want to find out more about me and my family head over to our About us page.

14 thoughts on “Sponsor a Family Support Worker at Rainbow Trust”

  2. Savannah

    Wow, you truly don’t realize how lucky you are until you read a story like this. Things like this make me so happy that we are not in need of a family support worker, but so thankful that these types of programs exist. I’ve never heard of this before, but what an absolutely WONDERFUL idea. As much as these support workers help these families, it would also be interesting to read how deeply their lives have been touched by these special children. #KCACOLS

    Reply
  3. justsayingmum

    This literally made me cry – such a sad journey for this family with such heartbreak – I’ve just clicked on the link and left open in tabs and will certainly be donating. That you for sharing #KCACOL

    Reply
  4. Bread

    Wow what a story, this family has gone through so much I’m glad they got some support from such an invaluable service. #KCACOLS

    Reply
  6. tracey bowden

    Oh this broke my heart reading this! This service must be invaluable to families such a worthy charity to support thank you for sharing this with us
    Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday

    Reply
  7. Angela Milnes

    What a fab charity! I think any charity supporting sick children or adults or families struggling with illness is fabulous. Angela from Daysinbed via #KCACOLS

    Reply
  8. Fairy Queen

    Well done for publishing a post which highlights charitable work. There are so many causes that need the light focused on them and families is one of those close to my heart. thank you x

    mainy – myrealfairy

    #KCACOLS

    Reply
  9. Leo Lionman & Mummy

    My little brother had aweful childhood epilspsy as did my mother so this brought a tear to my eye. I was a young carer so think it is lovely that this charity are offering support workers, they sound like they are such kind, loving people. Thank you for sharing. #KCACOLS

    Reply
  10. mommyslittleprincesses

    Such a heartbreaking story. The Rainbow Children’s Trust sounds like a truly wonderful and supportive family charity. Thank-you for bring it to my attention. Xx #KCACOLS

    Reply
  12. Clare

    Such a heart breaking story. I have heard of this charity before but didn’t realise the level of care and support they provide. They sound like an amazing charity that needs the recognition, support and a high level of donation. Well done you for giving them some exposure! Sorry, I am a bit late linking to last weeks #KCACOLS xx

    Reply
  13. The Pramshed

    Thank you for sharing this emotive and moving post with us, it is so good to know that there are super people at the Rainbow Trust who will dedicate their time to support children and their parents in difficult times. The story has really moved me, and I hope that your post encourages and provides a lot of sponsorship for the Rainbow Trust. Thank you for linking up another post this week to #fortheloveofBLOG, we would love to have you join the party next week. Claire x

    Reply

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