The sound of Hope...

I remember the day I browsed through Facebook and saw the picture of a smiling happy little girl (with motor impairment) strapped to her daddy, with a harness and special shoes enabling her to walk with him.  I just knew I had to get a device like that for Juneldè.  To be able to see her upright again after more than 16 months of lying down would be priceless.

The device is called an UpSee, designed by Leckey for Fireflyfriends.  The original idea was brought to them by a mom, Debby Elnatan.  She designed her own version for her son Walter.  Walter has Cerebral Palsy and when he was two years old his therapists informed his parents that he did not know what to use his legs for.  His mom decided to start walking him by holding him upright, however this process was physically very demanding.  So the idea of the UpSee was born and she designed several versions which she herself used with Walter.

Firefly launched the UpSee on the 1^st of April 2014, 14:00 BST (British Summer Time).  I spent hours preparing to purchase it for Juneldè.  I went onto the Webinar, measured Juneldè, and put up spread sheets to make the budget work on our side.  With donations from caring people we were able to make this happen.  The day finally arrived when we could purchase it, excitement ran high.  However there was such a big international demand that the website could not handle the traffic and went offline for 24 hours.  The following morning at 05:00 the website came online again and I finally ordered our UpSee…

3 Days later came the FedEx phone call confirming my details and 5 days later the FedEx delivery van stopped at our gate.  When I opened the box I was yet again amazed at the simplicity of the device.  It was also visually appealing with a denim jacket and bright pink inlays. 

You might wonder why the need to get Juneldè upright, would it help to get her to walk again?  I too was at first confused when already in rehabilitation hospital the therapists wanted to put Juneldè in a standing frame as well as pull and roll her upright on big gym balls.  The main idea, as explained to me, was not to teach her to stand and walk per se, it was however to get weight transference through her joints, most importantly the hips.  You see, once we start walking or reach a certain age, we need to grind our hips into the hip socket, otherwise run the risk of hip dislocation.  In Juneldè’s case, her severe dystonia and muscle spasms furthermore pushes the joints apart, instead of connecting the hip bones to the socket.  In an effort to address this need, we purchased a standing frame.  Juneldè however had no regard for this medical explanation and refused to stand in the frame.  She hated the feeling of being restrained and strapped in, and thus her spasms and severe contractions of muscles were only worse in the frame.  We then started to walk and stand Juneldè ourselves, positioning ourselves behind her and using a large therapy ball to roll her into standing.  This worked much better, however couldn’t be sustained for a long period of time, thus hampering the therapeutic effect of this.

In this context we were exhilarated when our UpSee arrived, however also fairly apprehensive that Juneldè will react the same way to this device.  The first time we had her strapped in front of her daddy you could see the strain on her face, but she was clearly in her element.  She did not complain or pull or pushed, and it was so thrilling and motivating to see her upright.

Daily when daddy Julius arrived home we would put her in her UpSee and they will walk.  At first only 24 metres could be managed.  Later we were thrilled with the 73 metres she managed.  And then finally yesterday she walked this way for more than 100 metres!

Our miniature Maltese Bella was in her element to see Juneldè on her feet and outside and relished the opportunity to play ball.  It is this video I posted on my Facebook wall and it was the comment of a friend that struck me.  She pointed to my laugh on the video and said that that is the sound of hope.  I myself then listened to the video again and heard newfound light-heartedness, joy and, yes, also hope in my voice…

Thank You Fireflyfriends and UpSee for this wonderful invention!