Our Pal - River W


Contact Details

C/O 10 Slaidburn Close
Milnrow
Rochdale
Lancashire
OL16 4YE
United Kingdom


Email Pal


NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Other Information

  • Parents/Guardians - Jeni and Chris
  • Interests - Rivers loves Justin's House from Cbeebies. All Disney related things. Dogs, trains, play-doh and slime, anything sensory. He enjoys dancing, rollercoaster 's and having lot's of fun
  • Favourite Colour - No favourite
  • Able to read? - No
  • Able to use hands? - Yes
  • Visually/hearing impaired? - No
  • Suffers from any developmental delay? - Yes. Please aim post around the age of 3 and also don't send small objects River could put in his mouth

Siblings - aged 3 to 16 wishing to receive post

  • Roxi-Blue 04/10/2007
    • Interests:
      Roxi-Blue loves the Disney character Stitch and Princess Bell. Unicorn's, Fairies, Mermaids, anything magical! Goats, Foxes, rabbits and cats. Harry Potter themed things. Squishy's, slime. Her favorite colours are yellow and Blue.
  • Ocean 29/05/2015
    • Interests:
      Ocean love's ALL animals, his favorite are rhinos. He love's going to the zoo and farm. He's into Disney, Play Mobil, Ryans Toys collection and Mine Craft. To be honest Ocean has great enthusiasm for everything!!
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About - River W


Please do not send small items River can put in his mouth or latex balloons (he doesn’t have an allergy but they are dangerous to him).

Our son River suffers from a life-threatening condition. He has an extremely rare and complex mutation on his CNK SR2 gene. There is no cure!  River will need 24/7 lifelong care and he will never really have friends he can play with or share his life with because he will never have his own independence.

River is non-verbal, but can communicate. He sadly suffers from the life threatening type of seizures, status epileptics, which are a medical emergency. He’s attended resus too many times – first when he was only 5 weeks old. I (his Mum) had to perform CPR on River when he was 2 years old and he is rushed to ressus by ambulance frequently. He also has central sleep apnoea, hypermobility syndrome, sensory processing disorder, autism, ADHD, severe learning disabilities etc.

All we can do is hope and pray our River makes it into adulthood, as we have nearly lost him so many times. We want to make the most of every day we have with him, making special memories and for him to enjoy his life to the best he can. When River is able to he loves going to theme parks, going on fast rollercoasters, watching live shows, farms, zoos, all kinds of days out, he has a real love for life and having fun!

Despite all his challenges, he is such a delightful and sunny boy, so caring and determined to fight everything life has thrown at him, and he is loved by everyone who meets him. River is such an inspiration.

Update 1st October 2019

River is taking a new medication to help with his ADHD which had worked wonders for his concentration, so his development is coming on better now which is great news!

He is having lots of little seizures at the moment which isn’t great but better than his very big ones which have caused respiratory arrest and cardiac arrest like the ones he had last year. So all in all, taking each day at a time.

Roxi-Blue, Rivers big Sister is having a difficult time with her autism at the moment so her monthly projects are something she really looks forward to and loves, thank you so much for these. Also Rivers little brother Ocean is facing some difficulties and going through some assessments so its been a very busy time.

I wish I could thank you all individually for the love you show our family, thank you Post Pals for your continuing support, our post is awesome!!

Update 10th August 2019

Well I’m currently lying in bed cuddling River due to him struggling with some bad side effects from some medication. He’s been doing really well on it, but today the dose has increased and he’s having anxiety attacks and doesn’t want to come out from under a duvet with me. But most days River has been doing a little better than he has been and that’s made us all very happy. He’s unfortunately losing a lot of weight which we are trying to control. But on the whole we are living each day to the best we can as a family.

Thank you Post Pal’s for always being there for us.

Update 2nd March 2019

River’s struggling and unfortunately his special school have noticed that since Christmas he’s stopped retaining information and not doing as well. New plans for his schooling is in process. He misses a lot due to his medical issues. His more recent tests (EEGS) show that River is having a lot more seizure activity, so this is more than likely why he’s not doing too good.

We are working closely with one of River’s consultants on different medication plans and changes to try to get his seizures under control. We hope for better days. Our family would like to thank you all for the thoughtful post you send to us. Your kindness and support brings so much excitement and smiles. And as parents reminds us we aren’t alone. Thank you so much.

Update 1st July 2018

River has missed a lot of school recently due to him having a lot of seizures needing to use his seizure rescue medication for status Epilepticus seizures. When he has made it into school he’s been getting shaking and too tired so we have been bringing him home early. But he did get to enjoy his school sports day, he was so chuffed to see us all in his school, he found it very funny and was showing us what he could do as he loved making us smile and praise him! Due to all the seizures,he has had so much trouble sleeping, getting headaches and sickness, and just generally knocking him out of sorts, so as a family we have been taking one day at a time. And when Rivers has been up to it getting him out in the lovely sunshine.
He has been receiving lovely post from his amazing Post pals, along with his big sister and little brother who have had so much fun opening cards, letters, pictures and playing with gifts. We thank you all so much, it means so much to our family, bringing so many smiles when it’s needed. Thank you.