Son’s early birth inspires newlyweds to support children’s charity | Action Medical Research

Son’s early birth inspires newlyweds to support children’s charity

26 August 2015

A generous couple from Manchester raised hundreds of pounds for children’s charity Action Medical Research when they opted for donations instead of wedding gifts.

When Paul and Jade Livsey tied the knot on 13 June, they asked guests to give money to help save and change children’s lives in place of the more traditional teapot or toaster.

The couple, who also have a three-year-old daughter, Layla, were inspired to support Action Medical Research after son Olly, now one, was born four weeks early. After a barrage of tests while he was in intensive care for the first three months of his tiny life, it was discovered Olly’s pituitary gland was small and part of it could not be seen on his MRI scan – which means it does not produce enough growth hormones as well as other vital hormones.

His body also doesn’t produce cortisol, often called ‘the stress hormone’ for its role in regulating the body’s response to stress, and he suffered some heart issues during those first few months as a result.

“We chose to support Action Medical Research because they fund studies to help sick and disabled children - one of those studies looked at screening for adrenal deficiency within five days of birth, something which would have really helped our little man,” says Paul, 32, director at Sandhurst Associates.

"Once we found out that they have also helped to discover and implement many great things for babies, children and pregnant women over the years, like studying the importance of pregnant women taking folic acid, our minds were made up that it was a really worthy cause to support."

The couple initially hoped guests would help them to raise £500 for the children’s charity but they were delighted when the final total reached £1,410.

“We were so shocked with how much we raised – it was amazing,” says 29-year-old Jade. “We are really fortunate that we don’t really need any material things so this seemed the perfect way to fulfil the promise we made to ourselves in the hospital to do as much fundraising as we could.”

Olly is now a happy one-year-old who, despite needing regular doses of hormones, enjoyed a birthday party with a bouncy castle to mark his major milestone.

“Olly is making great progress now we have the management of medications under control,” adds Paul. “It is a condition which will need ongoing close monitoring but we are keen to not let it impair his quality of life - you wouldn’t be able to tell what he’s been through so we just wanted to do our part to try and avoid other families having to go through the same thing.”

Action Medical Research is a UK-wide children’s charity which funds desperately needed research to tackle the diseases that devastate the lives of so many of our children. It has been funding medical breakthroughs since it began in 1952 including helping to introduce the first polio vaccines in the UK, developing the use of ultrasound in pregnancy and testing the rubella vaccine.

The charity is currently supporting work around childhood cancer, Down syndrome, epilepsy, and cystic fibrosis, as well as some rare and distressing conditions that severely affect children.

Among the research it is funding at the moment are two studies in Manchester. Around 3,900 babies are stillborn each year in the UK – 2.6 million worldwide – bringing heartbreak to their bereaved families.1-5 Funded by Action Medical Research, New Zealand charity Cure Kids and Sands, Dr Alexander Heazell, of the University of Manchester, is leading a team of researchers who are investigating whether there are things women could do during pregnancy to reduce their chances of experiencing stillbirth and protect their babies.

The second study, led by Dr Brian Bigger of the University of Manchester, is developing a new treatment for Sanfilippo type B, a rare illness that starts to cause problems when children are just two, three or four years old, in the hope of improving the lives of both children and their families. At first, children may simply seem naughty or hyperactive; sadly though, they go on to experience a gradual but relentless deterioration in their mental and physical abilities, with few living beyond their teenage years. 

For more information about Action Medical Research’s work, please visit action.org.uk

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For high-res images of the Livseys on their wedding day, please click on the links below:

http://www.action.org.uk/sites/default/files/downloads/press/livsey_family_wedding_1.jpg

http://www.action.org.uk/sites/default/files/downloads/press/livsey_family_wedding_2.jpg

http://www.action.org.uk/sites/default/files/downloads/press/livsey_family_wedding_3.jpg

For an image of Olly Livsey in hospital as a baby, please click on the link below:

http://www.action.org.uk/sites/default/files/downloads/press/olly_livsey_in_hospital.jpg

References:

  1. Office for National Statistics. Statistical bulletin: Births in England and Wales, 2012. Key Findings. http://www.ons.gov.uk/ons/rel/vsob1/birth-summary-tables--england-and-wa... Website accessed 28 November 2013.
  2. General Register Office for Scotland. (2011) Vital Events Reference Tables 2012 (Section 4: Stillbirths and Infant Deaths), Table 4.1  Live births, stillbirths, perinatal, neonatal, postneonatal and infant deaths, Scotland, 1946 to 2012. http://www.gro-scotland.gov.uk/files2/stats/ve-ref-tables-2012/ve12-t4-1... Website accessed 28 November 2013.
  3. Northern Ireland Statistics and Research Agency. Deaths in Northern Ireland 2012. Statistical Bulletin 21 May 2013. http://www.nisra.gov.uk/archive/demography/publications/births_deaths/de... Website accessed 28 November 2013.
  4. NHS Choices. Stillbirth. http://www.nhs.uk/conditions/Stillbirth/pages/definition.aspx Website accessed 21 November 2013.
  5. Cousens S et al. National, regional, and worldwide estimates of stillbirth rates in 2009 with trends since 1995: a systematic analysis. Lancet 2011; 377(9774): 1319-30.

NOTES FOR EDITORS:

For more information on Action Medical Research, please contact Ellie Evans, Fundraising Communications Officer, on:

T: 01403 327480

E: eevans@action.org.uk

W: action.org.uk

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Action Medical Research is a leading UK-wide charity working to save and change children’s lives through medical research. We believe that the diseases that devastate the lives of so many of our children can be beaten. We have been funding medical breakthroughs since we began in 1952 like the first polio vaccines in the UK, ultrasound in pregnancy and the rubella vaccine – helping to save thousands of children’s lives and change many more.

Just one breakthrough, however small, can mean the world. Charity reg. nos 208701 and SC039284.

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