Help needed with dis­ease

Child deals with a rare un­di­ag­nosed syn­drome

Kapiti News - - Front Page - Ros­alie Wil­lis

It was on day two of Kati’s life, dur­ing rou­tine hip checks that doc­tors no­ticed some­thing was wrong.

Fast for­ward six years and Kati Allen from Rau­mati has been to hun­dreds of hos­pi­tal vis­its, had nu­mer­ous surg­eries and gone from spe­cial­ist to spe­cial­ist.

The re­sult is a con­di­tion that doc­tors and spe­cial­ists in New Zealand have never seen be­fore.

Born with sco­l­io­sis with kypho­sis, the sim­ple way to ex­plain Kati’s con­di­tion is that her spine has twists and curves in it that most other peo­ple’s don’t have, an as yet un­di­ag­nosed skele­tal syn­drome.

Her spine be­ing at such a de­gree of cur­va­ture means her heart and left lung are shut­ting down, no longer able to cope with the stress and pres­sure be­ing ap­plied by the spine.

The bright and bub­bly Kati, who loves play­ing Lego with her brother and go­ing to the beach with the fam­ily’s dogs, is con­stantly in crip­pling pain.

“Her skele­ton is re­ally frag­ile and a lot smaller than it should be but other than that they haven’t been able to de­fine it as one thing,” Kati’s mother Es­ther Allen ex­plains.

“Every day for Kati is a strug­gle.

“She’s been un­der a ge­netic team in Welling­ton and with all their test­ing they haven’t found any­one in New Zealand to match her or to match her to any other kind of syn­drome in New Zealand.

“Spe­cial­ists are pulling as­pects from dif­fer­ent syn­dromes that are known, pulling lit­tle bits and pieces such as the frag­ile bones and the sco­l­io­sis of the spine to­gether, cre­at­ing a Kati syn­drome.”

The fu­ture is un­known but the first step is talk­ing to doc­tors at Bos­ton Chil­dren’s Hos­pi­tal in Mass­a­chu­setts, USA who are spe­cial­ists in spinal is­sues.

“We have all kinds of ques­tions that we re­ally want an­swers to, and with Bos­ton be­ing the lead­ing hos­pi­tal in spinal care for chil­dren, deal­ing with more than 9000 pae­di­atric spinal pa­tients each year we hope they’ll have some an­swers to our ques­tions.”

With a much larger pop­u­la­tion Es­ther is hop­ing they’ve had sim­i­lar cases to Kati’s, how­ever get­ting a Skype con­sul­ta­tion costs $US650.

At the mo­ment the best op­tion is surgery to straighten out Kati’s spine.

With 50-100 per cent chance of hav­ing se­vere com­pli­ca­tions, Es­ther has to pick the best op­tion out of the worst case sit­u­a­tion.

“It’s a re­ally tough call as a mum.

“You just want to do what’s best for your child.

“With­out the surgery on her spine Kati faces her heart and left lung hav­ing se­vere dam­age and fail­ure.

“Ei­ther way it’s hard. It’s a lose-lose sit­u­a­tion.”

Af­ter six years of do­ing it on their own, Es­ther is fi­nally ask­ing for fi­nan­cial help, cre­at­ing a Givealit­tle page.

Trav­el­ling to and from ap­point­ments and spe­cial­ists while con­stantly look­ing af­ter Kati is a huge fi­nan­cial bur­den on the sin­gle-in­come fam­ily.

With Bos­ton pre­pared to do the Skype con­sul­ta­tion, that is just the start.

“Kati has such a mag­i­cal per­son­al­ity and she has gone through so much.

‘Spe­cial­ists are pulling as­pects from dif­fer­ent syn­dromes that are known, pulling lit­tle bits and pieces such as the frag­ile bones and the sco­l­io­sis of the spine to­gether, cre­at­ing a Kati syn­drome.’

Es­ther Allen

“We need to raise money for the con­sul­ta­tion and all the other costs that come with the travel and surg­eries in fu­ture.

“We just love her so much. Kati needs your help.”

To help Kati and her fam­ily visit www.givealit­tle.co.nz/ cause/kati-needs-your-help

Kati Allen with her mother Es­ther Allen.

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