Thanks for taking the time to visit my JustGiving page.

Our son Lyall Cookward is a remarkable little boy who has gone through more in his short life than most people go through in a lifetime. Please take a couple of minutes to read his story and see why we are so keen to “Raise a Smile for Lyall”

Lyall was born at 38 weeks and had been diagnosed antenatally with a complete AVSD which is a heart condition. We also knew there was a high probability that he would have Down Syndrome.  Lyall struggled to orally feed and spent the first 2 weeks in hospital.

He went into heart failure at 3 weeks and had emergency surgery at 4 weeks where a band was put around his pulmonary artery .

Over the next few months Lyall was in and out of hospital with severe reflux, chest infections and erratic breathing episodes and stopped breathing on several occasions. His reflux was controlled with several medicines and by being fed continuously via NG tube. At 6 months old he had a Feeding tube fitted in his stomach called a Gastrostomy and an operation called a Nissans Fundoplication  on his stomach to control the reflux. 

At 7 months he was admitted for his full corrective heart surgery. Post surgery he could not be weaned off the ventilator and after a few weeks it was established that he had severe Bronchomalacia and Tracheomalacia and would require Long Term Ventilation.  He was extremely ill and required complete sedation to keep his breathing stable.

He had a Tracheostomy at 8.5 months but struggled to get established on any of the mobile ventilators that were being used in UK hospitals . His pressures and oxygen requirement were significantly increasing.  At 11 months he was reviewed by a respiratory specialist who established that he had acquired Chronic Lung Disease from being ventilated on high pressures. He wasn’t hopeful that Lyall would ever cope on any portable ventilator and may just continue to deteriorate until he died. We were told that the only option may be for Lyall to be transferred to a hospice and have palliative care.

The Consultant tried him on massive doses of steroid which had a miraculous affect and his pressures and oxygen requirement started to reduce gradually. It was decided to trial him on a new type of ventilator and in the week of his 1^st birthday he was established on this ventilator. Two weeks later he started doing home visits and a month later he came home with the support of the Long Term Ventilation Team from the hospital.

On 1^st December  2010 he was fully discharged to the Continuing Care Team.  In February 2012 we stopped having carers and have been doing all his care ourselves.

In June 2011 it was decided to start weaning Lyalls ventilator pressures and he coped well and in July 2011 he started to have time off the ventilator in the day time. A run of chest infections from August-October 2011 set this back but gradually he started to build this up again. By January 2012 he was having full days off the ventilator and he began to have his daytime sleeps without the ventilator. Very quickly he showed that he could manage and started to pull it off at night in his sleep. Another cold set him back but by March 2012 he was ventilator free day and night.

He had 2 attempts at removing his tracheostomy tube in March and June 2012 but both times he failed to cope without it when asleep. A review showed that he had developed a rare condition called Supra Stomal collapse meaning the upper airway above the tracheostomy collapsed down so he was unable to breathe when the tracheostomy was removed.

It is became clear that Lyall would not cope without his tracheostomy unless he had major reconstructive surgery of his airway. A review in April 2013 showed he was not yet ready for this operation so over the next few months he had his tonsils removed, work done to strengthen his epiglottis and regular reviews of his airway.

In Feb 2014 his ENT surgeon said his airway was looking the best it had ever looked and on 13^th March 2014 he was admitted to the LGI for a Laryngotracheal Reconstruction (LTR)-Single Staged Repair whereby a piece of his rib was grafted into his airway to replace the collapsed area and his tracheostomy removed. Following the surgery he was ventilated and sedated in PICU for a week then taken back to theatre and woken up to see if he could breathe unaided.

On the 20^th March 2014 at 1.40pm Lyall came out of theatre breathing through his mouth and nose for the first time since he was 7months old. It was incredible. 5days later he came home!

The post op recovery was very tough as he was addicted to the medication that had been used to keep him sedated and it took almost 3 weeks to wean him off this with lots of difficult side effects.

But now 5 weeks post op he is getting back to his old self and we are seeing so many exciting changes. The tracheostomy prevented air going over his vocal chords making it very hard for him to vocalise but now he is making lots of sounds and each day attempts more and more words. He has the most fantastic giggle which seems to bubble up from his toes and tumble out of his mouth. Even hearing him cry is lovely as there was nothing harder than watching his silent cry.  He also no longer needs constant medical supervision which is liberating for both him and us. Last week he went out with his grandparenst for the first time ever in his life.

Lyall has made remarkable progress and we are completely indebted to the LGI for all they have done for him. From the 20 week scan through to today we and Lyall have had the most amazing care at Leeds General Infirmary, We are determined to give something back and wanted to find a way of supporting children like Lyall.

Lyall has communicated using Makaton which is a form of sign language whereby signs are used alongside the spoken word to aid communication. Lyalls speech has been delayed both because of the tracheostomy and also his Down Syndrome. His signing is however phenomenal and given him a voice even when he has struggled to speak.

We decided we wanted to raise money to buy Makaton resources for all the Childrens Wards and work with the hospital to enable frontline staff to learn some basic signs which could go such a long way in helping make the hospital experience less stressful for children like Lyall.

We have 2 fundraising events planned.

Lyall is running the Jane Tomlinson Fun Run on 11^th May. Then on 6^th June we are holding a huge fundraising party to celebrate his 5^th Birthday and the absolute stars of the signing world-Singing Hands will be performing. Lyall doesn’t want presents, but instead would like people to donate to his fundraising efforts.

So if you want to help “Raise a Smile for Lyall” please give generously!

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