‘When we go to Ty Hafan, noth­ing else mat­ters’

South Wales Echo - - NEWS -

JUST be­fore Christ­mas Day 2011, mum Terri Evans re­ceived the great­est gift of all when her son Rhys was born.

But her dreams of the per­fect fes­tive pe­riod at home with her new­born son and two daugh­ters, Teigen and Faith, lay in tat­ters.

In­stead of shar­ing presents and en­joy­ing din­ner to­gether at home the fam­ily were in hos­pi­tal as tiny Rhys bat­tled a heart con­di­tion which had been picked up dur­ing a rou­tine scan.

The left side of his heart was com­pletely un­der­de­vel­oped and he spent the first nine months of his life in hos­pi­tal un­der­go­ing count­less op­er­a­tions.

“Noth­ing could have pre­pared me for that time,” said Terri, from Cardiff.

“My poor Rhys. He was so small, so frag­ile – it was ter­ri­fy­ing to see him go through so much.

“I was phys­i­cally and men­tally drained. I couldn’t cope with it all.”

Rhys was di­ag­nosed with hy­poplas­tic left heart syn­drome which means part of his heart is un­der­de­vel­oped, lim­it­ing him from stren­u­ous ac­tiv­ity.

“From the out­side you wouldn’t think there is any­thing wrong. He is like a lit­tle bot­tle of pop,” said Terri.

“He is so cheeky and ex­citable. The re­al­ity is we have to be so care­ful – Rhys can’t even walk down the end of the street with­out get­ting tired.

“Some nights he wakes cry­ing in pain from cramps due to his poor cir­cu­la­tion. “Like most lit­tle boys Rhys wants noth­ing more than to play in the lo­cal park or go to the swim­ming pool – but it’s just not safe for him with­out hav­ing med­i­cal sup­port on hand.”

When Rhys was fi­nally dis­charged Terri said she felt alone with­out the sup­port of doc­tors and nurses.

“It dawned on me – how would I cope on my own?” she added.

“Apart from my mum, who does so much for us, I didn’t have any­one else. Rhys had been cared for by so many amaz­ing doc­tors and nurses and now it was down to just me.”

Those nine months spent on the ward also took their toll on Rhys’ sis­ters Faith and Teigen, now aged 11 and 10.

“They needed their mum too,” said Terri.

“Teigen was only four at the time and was so anx­ious. When we re­turned home she strug­gled – she didn’t want to go to school and didn’t want to mix with other chil­dren.

“All the while, Faith was try­ing to be the strong one as the el­dest. It was heart­break­ing to see the im­pact of this trau­matic ex­pe­ri­ence on my daugh­ters.”

When the fam­ily left hos­pi­tal a nurse men­tioned chil­dren’s char­ity Ty Hafan, which looks af­ter life-lim­ited chil­dren and their fam­i­lies.

“I de­cided I would get in touch – and I am so glad that I did,” added Terri.

“Ty Hafan wel­comed us into their fam­ily and has helped each mem­ber of mine.

“On our first visit I was so ner­vous, I didn’t know what to ex­pect. But as soon as we got there I felt at ease as I re­alised that fi­nally some­one was there for us all.”

Recog­nis­ing the strain Rhys’ med­i­cal jour­ney placed on Terri’s daugh­ters, Ty Hafan got them in­volved with their Su­per Sib­ling group.

“It helped Teigen mix with other chil­dren while hav­ing the safety of know­ing I was still there,” said Terri.

“Her con­fi­dence blos­somed. Now Teigen and Faith con­tinue to at­tend all sorts of fun ac­tiv­i­ties with their new Ty Hafan friends. The Su­per Sib­lings group saved my girls.”

Rhys is now five years old and a reg­u­lar vis­i­tor to the hos­pice, where he en­joys mu­sic ther­apy, hy­drother­apy and play­ing in the arts and crafts room or out­side in the pi­rate ship-themed play­ground.

“Rhys has grown up know­ing Ty Hafan as his sec­ond fam­ily and loves his ‘hol­i­days’ with us there. His face lights up when he is in the play­ground or the hy­drother­apy pool, a fun yet safe space for him. I can’t thank Ty Hafan enough for this.

“When we go to Ty Hafan noth­ing else mat­ters. The rest I get goes be­yond a good night’s sleep. I can stop wor­ry­ing. The girls and I get to spend qual­ity time to­gether. We love go­ing to bed early and hav­ing a sleep­over, we get treats, have a face mask and watch a DVD. It’s such pre­cious time, which I can’t nor­mally give to them.

“Ty Hafan means I can be a mum again, to all three of my chil­dren.”

As Christ­mas – and Rhys’ sixth birth­day – ap­proaches, the fam­ily is al­ways con­scious of how many other fam­i­lies across Wales are go­ing through sim­i­lar dif­fi­cul­ties.

This year, the fam­ily is sup­port­ing the char­ity’s Christ­mas ap­peal to raise much-needed funds so the hos­pice can raise the £4.3m needed each year to sup­port chil­dren and fam­i­lies.

“Ev­ery Christ­mas, I feel so lucky to have my three beau­ti­ful chil­dren around me,” said Terri.

“I think back to where my jour­ney be­gan and know that there will be fam­i­lies in Wales who will find them­selves in a sim­i­lar sit­u­a­tion this Christ­mas. But I take com­fort in know­ing that Ty Hafan will be there for them just like they are there for my fam­ily.”

To sup­port Ty Hafan’s Christ­mas Ap­peal please visit www.ty­hafan. org/rhys

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