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Mother speaks of daughter’s Erb’s Palsy to help create awareness of condition

Thursday, 22 June 2017

Mother speaks of daughter’s Erb’s Palsy to help create awareness of condition thumbnailSabrina Sorrie and her daughter, Freya.

A STRABANE woman has spoken of her involvement in the Erb's Palsy Group in a bid to raise awareness about the condition.

Erb's Palsy - also known as Brachial Plexus Paralysis - is a condition which mainly due to birth trauma, can affect one or all of the five primary nerves that supply the movement and feeling to an arm. Each baby's injury is individual.

The paralysis can be partial or complete; the damage to each nerve can range from bruising to tearing. Some babies recover on their own however some may require specialist intervention.

Sabrina Sorrie is the Northern Ireland representative for the group. Her journey began with the traumatic birth of her daughter, Freya, in September 2011. Sabrina had a shoulder dystocia birth in which the head was stuck resulting in medics rushing to deliver Freya.

"Freya's right arm did not move and following a week in hospital, I was told very little about this condition. I was terrified of hurting Freya and didn't know what to do but I did have a very good physio from Omagh who came out the day we were discharged from hospital and we saw her weekly until Freya was one years-old, every two weeks when Freya was two. Eventually our appointments changed to monthly and now they are once every three months," Sabrina said.

"Our home physio programme is very important for Freya as she has to do her physio every day to keep her arm from tightening and to keep the muscles working properly and to help with her muscle tone as her shoulder droops and she tends to get pain in her elbow as she can not straighten it and struggles with putting her arm behind her back.

"She is now enjoying her swimming lessons and is part of the Otters Swim Club as this is all good physio but also something that she enjoys doing. Everything that Freya does I have to make them aware of her minor disability as I don't want her confidence to be knocked for example; doing the back stroke swimming or being able to straighten her arm, but I always tell her that she needs to try her best!

"At her age now she is very aware of her arm and very aware of the pain but we try to always keep her arm stretched to avoid this pain and we call it her strong arm!

"Freya is nearly six now so unfortunately her damage is permanent so she will need to carry out physio for the rest of her life so that her arm keeps functioning correctly."

Thanks to their local GP, the family were pointed in the direction of the Erb's Palsy Group and it was there that they have found the support and advice on how to best care for Freya.

The group aims to increase awareness and understanding of the condition whilst simultaneously providing support to affected families..

 "My local GP found the Erbs Palsy Group for me and from that moment I never looked back. I got all the advice, support and guidance on what I needed to do and how to get the best care for Freya.

"We have been over to Leeds quite a few times to see the Brachial Plexus Team who specialise with Erb's Palsy and we are under the care of Professor Simon Kay. The Erb's Palsy Group has been a great lifeline for me. We also attend orthopaedic consultants who monitor Freya in between visits to Leeds," Sabrina added.

The local woman has now been the Northern Ireland representative of the group for over three years.

"We are a support group to families but also organise midwife and physio study days. We actually have a physio study this week and are funding a physio to go over from Derry.

"We have four meetings per year - two face-to-face and two online - and then we have a NI family fun day which is being held for the fourth year running this year and have always been very successful," she explained.

"I am currently involved in a meeting group with doctors, physios and ortho docs to discuss the "development of a consistent regional pathway for assessment and treatment of Erb's Palsy in the neonate" which I am so proud of as this was my main aim to ensure that families get the correct support, advice and guidance to help with their children."

She has also just returned from Glasgow where she met the Scottish Brachial Plexus Team.

"We have many families that travel over from NI and we are trying to ensure that our families with young babies get referred to the specialists on time incase they need a nerve graft," she added.

Despite the busy workload, including having to travel to England three times a year for committee meetings, the mother-of-three says it has been an "amazing experience".

"I am really passionate about the group as I don't know how I would have coped without them. I was very down and still suffer from PTSD because of the trauma but the help and support this group gives is fantastic.

"The trustees of the group are very hard working and we all do this on a voluntary basis but each one of us love what we do. We have a closed Facebook page and we also have a website. The chairperson has 22 years of experience and she does so much learning and has good connections with all the correct medical people," she said.

To date, the group have held a number of fundraising events in NI including a bootcampathon, zumbathon and two band nights. Up next is a coffee morning this Saturday in Strabane which is being organised by Sabrina.

"We rely on fundraising to keep our charity going. This year alone I have had six new families and some have needed surgery and others have to do physiotherapy everyday.

"I would like to thank everyone for their continued support throughout the years and to anyone who has helped me out to do my fundraising events in the past. I always say you never know when you will need the help and support from a charity!" Sabrina added.

  Karen Hillyer is the Erb's Palsy Group chairperson. She can be contacted either via telephone on 02476 413 293 or email info@erbspalsygroup.co.uk.

For more information, you can also check out the website www.erbspalsygroup.co.uk

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