Hope for Alle­san­dro


Ruislip & Eastcote & Northwood Gazette - - Front Page - By VICKY MUNRO vicky.munro@reach­plc.com @vick­y_aFm

THE par­ents of a one-year-old boy with an in­cred­i­bly rare, life-threat­en­ing dis­ease need to find a match­ing donor to save their son’s life.

Alle­san­dro Maria Mon­tre­sor was di­ag­nosed on Septem­ber 6 with He­mophago­cytic Lym­pho­his­ti­o­cy­to­sis (HLH), a dis­ease that af­fects a tiny 0.002% of chil­dren and can only be cured by a bone mar­row trans­plant in a short time frame.

Doc­tors have told Alle­san­dro’s par­ents , Paolo and Cris­tiana, that he needs a donor as soon as pos­si­ble but a rare anti­gen in his bone mar­row means he has no matches in the world registry so far.

Now they are cam­paign­ing to make more peo­ple aware of how to sign up as a donor in the hopes of find­ing some­one who can save their son’s life.

Paolo said: “There are no words to de­scribe how we feel but what I am al­ways telling Cris­tiana is that though we do not have a healthy boy, at least there is hope.

“There are ba­bies that die be­cause they are never di­ag­nosed or are di­ag­nosed too late and there are ba­bies with even more rare dis­eases than ours.

“We are def­i­nitely not the worst off but it is hard be­cause we are still sit­ting in un­cer­tainty and do not know what the fu­ture will look like for our boy.

“Alle­san­dro is a joy­ful, happy baby. He never cried, never had a sin­gle tear dur­ing his months in the hospi­tal. Even with all the nee­dles, he is smil­ing al­ways.

“That’s all we wish for him as his par­ents, just to have a happy life.”

Alle­san­dro is cur­rently the first UK pa­tient to re­ceive an ex­per­i­men­tal treat­ment for HLH, which Paolo re­ports is “do­ing great”, but the treat­ment is only pre­dicted to re­main ef­fec­tive for a num­ber of weeks.

If a suit­able donor can­not be found in time, bone mar­row from his par­ents, each a 50% match, will be used. How­ever, this is far from ideal and means the pro­ce­dure will have a dif­fer­ent and more com­plex pro­to­col.

Paolo said: “Our cam­paign to get more peo­ple to sign up started as a drop and be­came a tsunami. Our Facebook page has been seen by hun­dreds of thou­sands of peo­ple in less than 48 hours.

“We have heard from fam­ily, friends and peo­ple in the UK and Italy, all want­ing to know how they can help.

“It’s con­cern­ing to find peo­ple are quite un­in­formed about the do­na­tion of bone mar­row. It’s no longer a pro­ce­dure that re­quires a drill or surgery, now the cells can be taken out of the blood.

“Even if we don’t find a match for our son, if we can in­crease the num­ber of peo­ple be­com­ing donors, it will still ben­e­fit other sick ba­bies.”

Alle­san­dro, who spent two months in St Mary’s Hospi­tal af­ter be­ing born at only 30 weeks in March 2017, fell ill on Au­gust 23 while on hol­i­day with his par­ents in Sar­dinia.

Doc­tors in both Italy and the UK said his high fever was caused by a vi­ral in­fec­tion.

How­ever, by Au­gust 27, his fever was over 40 de­grees and spots had ap­peared on his skin, af­ter which he was ad­mit­ted to Chelsea and West­min­ster hospi­tal be­fore be­ing moved to St Mary’s.

With the help of Great Or­mond Street Hospi­tal (GOSH), he was quickly di­ag­nosed with HLH and started treat­ment be­fore the dis­ease was able to spread to his brain and cause ir­re­versible dam­age.

Paolo said: “He is do­ing so well that now we have been dis­charged and only go into GOSH two days a week for the trial.”

Alle­san­dro Maria Mon­tre­sor needs a bone mar­row trans­plant

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