Bo­bie-lee Dixon

All she want­ed was a healthy ba­by, but when Gean­na Cun­ning­ham gave birth to her first and on­ly child Zephini­ah Hes­sic three years ago, a dif­fi­cult de­liv­ery left her ba­by boy with brain dam­age. He was lat­er di­ag­nosed with ataxic cere­bral pal­sy.

"It was re­al­ly a pro­longed labour and when he was de­liv­ered he was not breath­ing and the doc­tor had to re­sus­ci­tate him," said Cun­ning­ham.

It was not un­til Hes­sic was six-months-old that she re­alised some­thing was wrong with him.

"He was not sit­ting up for him­self nor was he reach­ing for things like a six-month-old usu­al­ly does," Cun­ning­ham said.

A wor­ried Hes­sic took Zephini­ah to a pub­lic hos­pi­tal and was told her son had cere­bral pal­sy. Not sat­is­fied with the di­ag­no­sis she sought a sec­ond opin­ion pri­vate­ly but the cere­bral pal­sy di­ag­no­sis was con­firmed.

"I re­al­ly did not even know what to do. I was so con­fused," said the sin­gle moth­er.

Cun­ning­ham be­gan to re­search as much as she could on the dis­abil­i­ty and how one should care for a child with cere­bral pal­sy. Re­al­is­ing it was a full-time job and at most times a moth­er is the on­ly one who has the pa­tience to tend to her child suf­fer­ing with the dis­or­der, she quit her job as a cook and has since been Zephini­ah's sole care­tak­er.

"It is re­al­ly hard, al­though I have some sup­port from my moth­er, it's not all the time she could as­sist me in look­ing af­ter him," said Cun­ning­ham who lives in Diego Mar­tin.

She said sor­row­ful­ly, "Some­times I break down be­cause it is non-stop run­ning with him. Any­thing I find out that can help him, whether it is a pro­gramme, sup­port group or oth­er­wise, I make my­self present, but I get so tired some­times," she lament­ed.

Cun­ning­ham re­ceives a dis­abil­i­ty grant from the Gov­ern­ment of $850, but it is nowhere enough to cov­er the ex­pens­es of a child with such a dis­or­der.

She said when the go­ing gets re­al­ly tough, she prays for a mir­a­cle for her son.

"I wish I could wake up one morn­ing and see him nor­mal. God knows I would give any­thing to see this," she said.

She finds some so­lace at times in oth­er moth­ers who are al­so car­ing for chil­dren with the dis­abil­i­ty. But that sup­port group set up by the Cere­bral Pal­sy So­ci­ety of T&T is al­so fac­ing many chal­lenges as it does not have a fixed lo­ca­tion where moth­ers can meet, sit and dis­cuss the way for­ward.

"The pres­i­dent is try­ing her best to find a per­ma­nent place for us, but it has not been easy," said Cun­ning­ham.

A cry for help

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Cun­ning­ham is cur­rent­ly pre­oc­cu­pied with find­ing the mon­ey to en­rol her son in the up­com­ing Ju­ly/Au­gust va­ca­tion camp host­ed by Shay's Foun­da­tion for Con­duc­tive Ed­u­ca­tion. The foun­da­tion was start­ed two years ago by Ann Marie McIn­tosh who lost her on­ly child to com­pli­ca­tions as­so­ci­at­ed with cere­bral pal­sy.

It of­fers a par­ent and child group pro­gramme an­nu­al­ly, which fo­cus­es on car­ing for the child, cop­ing skills for moth­ers or care­tak­ers and strate­gic learn­ing and spe­cial ed­u­ca­tion for chil­dren, among oth­er ac­tiv­i­ties. But Cun­ning­ham is find­ing it dif­fi­cult to raise the $7,000 need­ed by June 21.

"It may seem like lit­tle mon­ey to some, but when you are not work­ing, you are lucky to come by a $20 dol­lar bill, if so much. I have re­al­ly been try­ing to raise the mon­ey. I have even writ­ten the Prime Min­is­ter and the coun­cil­lor for my area, Diego Mar­tin North, but to date I have had no re­sponse from ei­ther of­fice," ex­plained Cun­ning­ham.

She said com­ing to the T&T Guardian to share her sto­ry was her last hope of get­ting some kind of help.

"I know peo­ple may not un­der­stand com­plete­ly how dif­fi­cult hav­ing a child with any kind of dis­abil­i­ty could be for a par­ent un­less they them­selves are faced with the sit­u­a­tion. But it takes a lot of mon­ey to look af­ter them be­cause they al­ways re­quire spe­cial treat­ment that most times do not come free," said Cun­ning­ham.

She is ap­peal­ing with the pub­lic to help her raise the mon­ey for her son to par­tic­i­pate in the camp.

"I am ap­peal­ing to the pub­lic to help me raise the funds for my son who is in great need. I just want him to have if not a nor­mal life, some­thing close to it," said Cun­ning­ham.

Cere­bral pal­sy (CP) is a dis­or­der that af­fects mus­cle tone, move­ment and mo­tor skills (the abil­i­ty to move in a co­or­di­nat­ed and pur­pose­ful way). CP is usu­al­ly caused by brain dam­age that oc­curs be­fore or dur­ing a child's birth, or dur­ing the first three to five years of a child's life.

The brain dam­age that leads to cere­bral pal­sy can al­so lead to oth­er health is­sues, in­clud­ing vi­sion, hear­ing, and speech prob­lems, and learn­ing dis­abil­i­ties.

There is no cure for CP, but treat­ment, ther­a­py, spe­cial equip­ment, and, in some cas­es, surgery can help a child who is liv­ing with the con­di­tion.

The ex­act caus­es of most cas­es of CP are un­known, but many are the re­sult of prob­lems dur­ing preg­nan­cy in which the brain is ei­ther dam­aged or doesn't de­vel­op nor­mal­ly. This can be due to in­fec­tions, ma­ter­nal health prob­lems, a ge­net­ic dis­or­der, or some­thing else that in­ter­feres with nor­mal brain de­vel­op­ment. Prob­lems dur­ing labour and de­liv­ery can cause CP in some cas­es. but this is the ex­cep­tion.

The three types of CP are:

spas­tic cere­bral pal­sy–caus­es stiff­ness and move­ment dif­fi­cul­ties

athetoid cere­bral pal­sy–leads to in­vol­un­tary and un­con­trolled move­ments

ataxic cere­bral pal­sy–caus­es a dis­turbed sense of bal­ance and depth per­cep­tion

MORE IN­FO

Peo­ple wish­ing to as­sist three-year-old Zephini­ah Hes­sic, can make con­tri­bu­tions via Roy­al Bank to ac­count num­ber 100019172662889. En­sure when mak­ing the de­posit you state the con­tri­bu­tion is for Zephini­ah Hes­sic and keep your de­posit slip, as this ac­count num­ber is the gen­er­al ac­count num­ber for Shay's Foun­da­tion of Con­duc­tive Ed­u­ca­tion. Con­tact can al­so be made to Cun­ning­ham on 702-0554.