Can you save our boy?

In or­der to save her son’s life, zoe Alder­son, 31, from Colch­ester, had to make an un­bear­able de­ci­sion...

Pick Me Up! - - CONTENTS -

Who knew if he’d have a fu­ture – un­less we made this choice?

As I lay my 2-year-old Henry, in his bed, his big, blue eyes filled with tears. ‘It’s OK, dar­ling,’ I soothed, bat­tling with tears of my own. ‘Mummy loves you…’ But Henry’s bot­tom lip be­gan to quiver.

‘Don’t hurt me, Mummy!’ he begged me.

He knew as well as I did what bed­time re­ally meant.

I’d have to hook up my boy to a pump, push a nee­dle into his leg, and let it take out the ex­cess iron in his blood overnight.

It was just ex­cru­ci­at­ing to watch. Henry hated it and I hated be­ing the one to hurt him.

‘Who’s my big strong boy?’ I’d say, but it broke my heart.

I knew it had to be done, to help him get bet­ter.

When Henry was born in Novem­ber 2015, his heart rate was rapid and blood lev­els low, he was at risk of dy­ing any sec­ond.

Three blood trans­fu­sions later, he lay in an in­cu­ba­tor in the NICU of Colch­ester Hos­pi­tal. I was three floors up in re­cov­ery, des­per­ate to see him.

And, when I did, me and my hubby Craig, 38, were told he had a 50-50 chance of sur­vival.

We were warned we’d lose him by 12 weeks – but Henry fought, as I knew he would, and de­fied the doc­tors’ grim ex­pec­ta­tions.

But some­thing was mak­ing him sick...and af­ter months of tests, we got a di­ag­no­sis. ‘Henry has some­thing called Di­a­mondBlack­fan anaemia,’ his con­sul­tant said.

DBA is a rare bone-mar­row fail­ure dis­or­der, where red blood cells that carry oxy­gen round the body aren’t pro­duced. He’d need reg­u­lar blood trans­fu­sions or he’d die.

‘What will his life be like?’ I asked mat­ter-of-factly.

I just wanted to know if I’d be tak­ing him to school, wav­ing him off at univer­sity, danc­ing at his wed­ding.

But no-one had a crys­tal ball, we had to learn with Henry day-by-day about DBA.

By his first birth­day, Henry had been hav­ing trans­fu­sions

once ev­ery three weeks.

It meant his iron lev­els were dan­ger­ously high. His pump was the only thing keep­ing them at bay.

We had op­tions, though. At 1, he be­came el­i­gi­ble for steroid ther­apy. With luck, it’d en­cour­age his body to make its own red blood cells.

It meant only a tablet a day would save my boy. I prayed each night, willed it to work.

But Henry was too poorly. One of his op­tions writ­ten off.

Next, we tried chela­tion ther­apy, a sim­i­lar process – a tablet to get rid of the ex­tra iron plagu­ing his body. But this failed, too. We were at our wits’ end. ‘What are we go­ing to do?’ I wept to Craig one night. None of these ther­a­pies were pain­less, all car­ried risks – but if one could save Henry, it was worth it.

Still, we were run­ning out of op­tions.

‘I don’t know,’ Craig sighed. Henry’s last chance would be a stem-cell trans­plant. That’s when Craig and I con­sid­ered IVF.

We’d al­ways wanted a big fam­ily, but an­other baby as poorly as Henry was scary. Yet if we had IVF, we could make sure he or she was healthy and maybe even a 100 per cent match for Henry... Sadly though, IVF wasn’t go­ing to be right for us in the end… Now we’d have to rely on an ex­ter­nal donor.

It was a last re­sort for any­one with DBA.

Some peo­ple sur­vived years with­out need­ing this kind of trans­plant. But, within two years of his lit­tle life, Henry was down to one of two op­tions – this trans­plant or life-long trans­fu­sions.

But with rec­om­men­da­tions from his doc­tors, the trans­plant was his best chance.

I couldn’t be­lieve we’d reached that point so soon.

We turned to the char­ity DKMS, and it of­fered us help and sup­port, kept our spir­its high when we felt low.

Ev­ery week that passed with­out a match for our boy was ag­o­nis­ing.

And still I couldn’t de­cide if this was a good idea.

Stem-cell trans­plants car­ried their own risks.

There were the usual wor­ries about re­jec­tion. But the big­gest worry I had was the risk of Henry be­com­ing in­fer­tile. Agree­ing to a trans­plant meant that he’d un­dergo se­vere chemo, which could af­fect his abil­ity to have chil­dren later in life. He was just a baby him­self, but now I was de­cid­ing whether he could have a fam­ily of his own one day.

It tore me apart. ‘How can we choose this for him? It’s his life, his fu­ture..!’ I sobbed.

But we had to do what was best for him now. Who knew if he’d have a fu­ture – un­less we made this dif­fi­cult choice? Henry was put on the wait­ing list – and, right now, we’re still wait­ing. We’re hop­ing for a match and the op to take place in spring 2019. Un­til then, we’re just tak­ing it day by day. Now we want to help raise aware­ness, spread the word. We need more peo­ple to sign up, to join DKMS, to help save some­one like our Henry... Life cer­tainly isn’t as sim­ple as it seemed four years ago. But we keep re­mind­ing our­selves that we were told our boy would die at 12 weeks. In Novem­ber, he turns 3. De­spite ev­ery­thing – the hours spent in hos­pi­tal, the hor­ri­ble de­ci­sions we’ve had to face – Henry’s happy and he’s here.

Fol­low Henry’s story at helpourhenry.org

Brave Henry has his trans­fu­sion Me, Henry and Craig: tak­ing life day by day

Our happy, bub­bly boy

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