The following is what I posted on Facebook on Sunday:
Most
of you don't know that Joey shares a birthday with a little boy named
Hugo who was also born with EB on the other side of the world in Sweden.
They will always be birthday buddies Hugo was born with a more severe form of EB though, Junctional-Hertliz:( But despite what a piece
of paper said, he beats the odds day in and day out surprising his
family and his doctors. His family rejoiced each and every day never
knowing when it would be his last. His mom, Hanna
and I spoke many times thru Facebook over the past 3 years. I was so
happy to see Hugo doing so well. Then tonight I got on my computer
remembering I need to translate something him mom posted earlier today
but I couldn't translate it on my phone. I never imagined i would be
reading that after 3 years, 2 months and 3 days, Hugo's little heart
could take no more and he is now flying thru Haven with perfect skin and
angel wings. My heart just breaks for Hanna and their entire family. 3
years maybe more than they thought they'd get, but 3 years wasn't
nearly long enough
Today there was an article published in a Swedish newspaper about Hugo. Here is the original link to the article:
Hugo
Here is the translated version via Goggle Translate.
Hugo was fighting for life - now he has fallen asleep
Hugo was struggling for life.
Against all odds, he was stabbed with a small bandaged hands against the incurable skin disease.
This weekend, he fell asleep, 3 years old.
- I hope that he plays with other kids up there now, says mother Hanna Johansson.
They did share three happy birthdays and at least three million kisses. But now, three years of intensive care, love and sorrow over , without warning.- It went very calmly . Hugo died at home in his bed , in his sleep. We did not know it would happen but the heart could not beat anymore, says mother Hanna Johansson.It was she who got the last wakeful night with Hugo.- I have not understood it yet. The father and I are separated , so it feels like Hugo is with dad and soon home again.The last time , especially last week , the boy felt better than ever.- He did not even trouble breathing. On Saturday , he went for the first time myself to the store, but to sit in the stroller. And in the evening he ran and played with his brothers until the clock 22.Was diagnosed after two monthsThe following day , the mother the most difficult words on Instagram ,
for all that followed Hugo's destiny and supported the family:" At 5:10 this morning dropped off our beloved son back . Much too
early , missing is endless. To get to know you is the nicest thing
happened to me. , I love you Hugo, today , tomorrow and forever."Hugo Törnqvist was born 8 March 2011. Two months later transformed
baby happiness to sadness when the boy was diagnosed with EB, Junctional
Epidermolysis Bullosa Herlitz , a rare genetic disorder that causes the
skin to form slow-healing blisters and loose.The doctors gave him no more than eight months. But two years later, mom Hanna on his blog celebrate his son's fighting spirit :"It's not bandages and gloves Hugo is wearing . It's sweatband and
boxing gloves , because we 're gonna beat the shit out of this disease !
""Hugo himself who has fought "When Aftonbladet 2013 visiting family outside Karlskrona Hugo would soon fill two years. Faced with the photographer he rolled proud meatball after meatball in mud with their little fingers.His joy was like any other two-year- insertion , but the parents planned only for two days at a time .The boy was in constant pain and a probe with nutrient solution via a
button on his stomach because his throat has become crowded of scarring .If he screamed with joy he risked airway emergency slammed . Therefore, had the home open floor plan with no thresholds to avoid new sores . Children's room was also embedded and the floor covered with a soft gymnastics mat. But pennants in the roof and the little balcony that dad Magnus
snickrat for Hugo to be able to look out the window made up for the
joy of play .- In particular, Hugo himself who has struggled . He never ever complained. I have never met a happier person , says the mother.But the struggle intensified , with emergency trips to the hospital ,
contrary to the Social Insurance of the right to assistance care - and
an increasingly bloody little body .The hope for a bone marrow transplant burst when Hugo hit by a virus that left him temporarily blind. And when the parents rejoiced that sårblåsornas number had gone down , he suffered rather severe breathing problems." He has taught me that there are no bad days "Yet life went on . Hugo learned to talk. His first words became a mother , soap bubbles and milk. And the last time he got help with the pedagogy of two assistants who replaced the nursery which he could never begin.- Hugo has taught me that there are no bad days. If you have a problem that can not be resolved you wait till the next day . You never give up.In parallel with all the routine chores , the big question still hanging over the family: How old was Hugo get rid ?- We are very grateful that he did not suffer in the end. He had to go away as we would rather , if one had to choose . But his brothers , 7 and 8 years, is very sad and want little brother back .Hanna Johansson is also grateful for the years all contact with other sufferers as she was able to share advice with .- Hugo's life has been a struggle , but also the best three years of my life . It is a privilege to have been part of Hugo's parents.
