Due figli morti per una rara malattia in pochi mesi, mamma disperata: «Spero almeno che sia stata dolce»

Due figli morti per una rara malattia in pochi mesi, mamma disperata: «Spero almeno che sia stata dolce»

di Enrico Chillè
Un dolore immenso, quello che due giovani genitori hanno dovuto provare in questi ultimi tempi. Nel giro di appena otto mesi, infatti, una malattia rara ed incurabile si è portata via due dei loro tre figli, il primogenito di 11 anni prima e la sorella minore, di nove, poi.

Sindrome di Sanfilippo, la malattia rara che uccide nei primi anni di vita
Bimba di 2 anni e mezzo 'condannata' a morire. L'appello disperato dei genitori su Fb



Stefanie Boyce e suo marito Justin, di 37 e 38 anni, sapevano da tempo che quello sarebbe stato il destino dei loro figli. I piccoli Jayden e Brooklyn, infatti, erano affetti dalla sindrome di Sanfilippo, una malattia che colpisce una persona su 70mila e che condanna, inevitabilmente, a problemi di varia natura e a una vita decisamente breve. La maggior parte delle persone affette da questa sindrome non arriva mai all'età adulta.

Così è stato anche per Jayden e Brooklyn, mentre la sorellina Ellie, di sei anni, non è affetta da alcuna malattia. Lo riporta il Sun, che racconta la vicenda della famiglia Boyce, che vive a Beach Park (Illinois), negli Stati Uniti. «A volte rifletto su questo, mi sembra molto ingiusto e non riesco a spiegarmelo» - racconta, a cuore aperto, Stefanie - «Io spero solo che la morte, per Jayden e Brooklyn, sia stata dolce e non sofferta. Per Jayden abbiamo fatto di tutto perché fosse così, ora l'unica cosa che mi allevia il dolore è sapere che ora sono insieme».

Sul proprio account Instagram e su un blog, Stefanie ha raccontato per lungo tempo com'è vivere con due figli affetti da un male che costringerà, prima o poi, a dover dire loro addio prima ancora di vederli crescere. «È terribile dover pensare a certe cose, ma continuo a chiedermi se la morte di entrambi sia stata dolce» - spiega ancora la donna - «Jayden amava ballare con la mamma, mentre Brooklyn cantava per noi. Sono stati bambini meravigliosi, dolcissimi ma capaci di combattere come guerrieri».

Jayden Boyce era morto il 13 novembre dello scorso anno, mentre la sorellina, Brooklyn, è deceduta lo scorso 6 agosto, il giorno prima del quattordicesimo anniversario di matrimonio dei genitori. «Ora, sicuramente, Jayden e Brooklyn saranno insieme in Paradiso, tenendosi per mano. Jayden teneva sempre per mano le sorelline, insieme a Brooklyn si completavano e quella perfezione ora è stata ricreata dopo otto mesi», spiega Stefanie.
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Jayden Alexander T. Boyce, 11, of Beach Park, IL, received his crown of life on Monday, November 13, 2017, as he laid peacefully between his loving parents. He was born on July 25, 2006 at Lake Forest Hospital. He attended Laremont School where he was loved so incredibly well by his teachers and the entire Laremont staff. Jayden was gentle, kind, and had a vibrant smile for everyone he met. He loved basketball, trucks, holding hands with his sisters, dancing with his mom, and playing with his dad. He impacted the lives of an entire community, and beyond, in his short time on earth — a legacy that will last for an eternity. He was a brave warrior in the fight against Sanfilippo Syndrome and helped make significant strides in helping to find a cure. Because of his hero work, other children with Sanfilippo have a chance at a possible cure in the future. His life also inspired the creation of Oasis, the special needs ministry at Immanuel Church, where he attended since birth. Jayden is survived by his parents, Justin and Stefanie Boyce of Beach Park; his sisters Brooklyn and Elliotte; his paternal grandparents, Ken and Joan Boyce (Bubba and Ama) of Beach Park; his maternal grandparents, Steve and Sherry Brandon (Papa and Nana) of Rockford, and Duane Bolling (Grandpa) of Belvidere; his aunt, Rian (Bill) Bogdala of Winthrop Harbor; his uncles Chad Boyce of Kenosha and Tyler Boyce of Zion. He is also survived by several cousins and a community of family and special friends whom love him dearly and are forever changed by his beautiful and courageous life. A visitation will take place on Saturday, November 18, 2017 from 10:00 a.m. - 12:00 p.m. with a service taking place immediately after at 12:00 p.m. Both will be held at Immanuel Church, 2300 Dilleys Road, Gurnee, IL 60031. In lieu of flowers, the family asks that you make donations to The Trike Project Foundation, 337 Megan Place, Winthrop Harbor, IL 60096. The family would also like to thank JourneyCare for walking with them through Jayden’s life and so gently navigating the last days of his earthly journey.

Un post condiviso da Stefanie Boyce (@stefanieboyce5) in data:


 

 
 
 
 
 
 
 
 
 
 
 
 
 
 

Together. There’s a weird feeling I have that my grief feels complete. There had been an anticipation of having to do this again and fear of what it would be like. My greatest fear was B’s passing would be sudden and tragic. A seizure. A morning I’d find her not breathing. Some way that I couldn’t say good-bye. Some way not as holy or sacred as Jayden’s. What parent has to think these thoughts, “I wonder if my daughter’s death will be as beautiful as my son’s?” I do. But, I’m not the only one. There was an incompleteness to my grief. Maybe that sounds wrong but it isn’t meant to. I certainly would have chosen another day of anticipation if it meant I could have B. It’s just J and B were always, J&B. A package deal. It was always hard to separate them, even google photo gets it wrong. Of course they were individuals, too. J was sweet, B was spicy. J was patient, B was ...me. J was a runner, B was a singer. Of course walking back in the house after Jayden left that last morning and placing B on my lap was a gift. And every beep from her feeding machine, every breath in his bed and pjs, every push of her stroller—our entire routine and life with her—connected us to Jayden. Perhaps my grief feels complete because now I can begin to grieve. For the routine, our life, caregiving that remained as reminders, has all disappeared in one breath. We are no longer a special needs family. Our membership to the club got revoked. Expired. And although we never wanted to join, once we did, we didn’t want to leave. Beauty is found in its members. God is found in its meetings. Don’t get me wrong, we will stay connected as honorary members, but honorary none the less. There’s a peace now that comes as I envision J and B together, just like this picture, holding hands. B is probably dragging him around Heaven giving him the tour even though J knows his way around, and I bet J is chuckling and going along with it as she does. Maybe they’re laughing together because B just had to pass on the 6 and J on the 13, so they could share the Monday, but in true Beeba fashion, her Monday would be first. I always wondered why 2, but not any more.

Un post condiviso da Stefanie Boyce (@stefanieboyce5) in data:

Ultimo aggiornamento: Mercoledì 15 Marzo 2023, 10:08
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