Wheelchair Van for the Beg Family
Sanfilippo Syndrome is a genetic error in the metabolism. It is a progressive disorder, meaning over time the girls have lost the ability to talk, walk, and swallow. Sadly, there is no cure and their lives will be taken much too soon from this cruel disease. Abeerah, Khansa, and Zahra are all in the final stage of the disease, meaning they are completely wheelchair dependent and rely on feeding tubes for nutrition/hydration.
As the mother of two children with this syndrome, our family has benefited from the kindness and generousity of others. When I think of having three children with Sanfilippo, plus two sons (one of whom has an autism diagnosis), I am compelled to act.
Wheelchair vans that can accommodate three wheelchairs are very expensive! It is my goal to raise the funds to purchase a wheelchair van for the Beg family so the girls can be in appropriate pediatric wheelchairs for proper positioning and to prevent skin breakdown (pressure sores). Their mother and father also need to be able to use a lift system to wheel the girls into the van and be safely secured.
I am dreaming big, so should we exceed our desired amount we are going to use the excess funds to purchase new wheelchairs for the girls who are currently using pediatric strollers which lack the necessary support they require.
Thank you for considering our cause. We hope you can join us in our effort to equip the Begs with a van they so desperately need.
I WROTE THIS THE DAY I LAST VISITED THE GRAVEYARD. I DON’T GET TO VISIT OFTEN SO EACH MY VISIT IS PRECIOUS. ITS BEEN A WHILE SINCE I VISITED SO ALL I CAN THINK OF THESE DAYS IS HOW TO VISIT MY GIRLS. SINCE YOU ALL BEEN THERE IN OUR HARD TIMES, THOUGHT TO SHARE THIS WITH YOU ALL=======
MY GRATITUDE BY YOUR GRAVES.
As I sat next to the graves of my beautiful girls staring at the ground, I just wonder how fast our lives have changed so much. There was a time when I use to stand between your beds looking after both of you, sometimes entire night standing between both of you suctioning one after the other, looking at your beautiful faces standing beside you all night and now I am sitting between your graves. I look down and silently talk to both of you, as I tell you all that has happening, while praying for you and wonder about your life in Jannah (heaven). I truly believe you’re smiling and giggling from somewhere above holding each other hands. Then I look up, and I see the sky and smile with tears falling down. This mother love is amazing, this connection stay strong even when the child is gone. This string stay attached. Your mind keep playing the memory game, your hands miss the touch, the hugs the kisses. You can’t help it. I agree, the grief is basically is the love that you couldn’t give. This may be hard to understand unless you have experienced it. Which i wish deep down that no one ever have to experience.
I looked up and see 100s of graves and no visitors I never found any visitors here. Some graves i see bunch of dead flowers means their family is visiting them. Sometime i walk up to each grave and say my prayer who are resting here beside my girls. In the distance, another close family friend’s grave which I stop to say a prayer every time I visited my girls , Each time while standing beside this young girl's grave to say my Salam, I visualize her life, her laughter, her pain and tears, her dreams and I visualized the grief of her loved ones.
It’s been year and 10 months since I’ve been continuously coming here to visit, first for Khansa and now since last 10 months visiting both of my girls. It is a heartbreaking destination. But, I’ve also come to know it is a place of finding peace to my heart. Place of love, hope, connection to the other world. A reminder for my self. It’s a place full of contradictions. For me, as heaviness of this place, there is also light, and life. It is here I’ve allowed myself to thoroughly experience grief, and it is here I’ve found the strength to continue to fully experience life in the best way I can. It is here I continue to question and learn how I’m going to live the rest of my life without seeing my two girls.
It is here I find strength and here I learn to find my gratitude and continue find the light. I will continue to say “thank you” to (GOD) Allah SWT for your life. For giving me such beautiful angels who I learn to love so deep. It is here where I say to myself If GOD in His wisdom picked me to be the mom of such a beautiful daughters, to entrusted my parenting for such a precious special children, He must see something in me that I do not see in myself is truly humbling. SO HUMBLING!!!
What an honor was placed on me to be their mom. And for that, I am eternally grateful.
I am grateful for all the beautiful memories I have of them — memories of heartfelt laughter, memories of heartfelt tears. The gratitude I have in my heart for everything they added to my life is inexpressible. They taught me the meaning of love and kindness. Taught me about caring for those who can’t take care themselves. Taught me that every single his creation has value.
“Loving people without expecting anything in return always turns out to have the greatest returns.” Ann Voskamp
First time entering the graveyard when I said out loud Alhamdulillah (A praise to GOD saying i am THANKFUL to you) My son looked at me with surprised expressions and I told him that yes I am grateful to his mercy to give me this place where I come to find peace and pour my love out. How many moms in the world might not have that losing their child in a way where there is no burial or a grave to sit besides. My heart and prayers goes to those moms.
As bereaved parents we learn the art of holding infinite space for both worlds. Our hearts hold both the blessings and the trials, the joy and the pain.
It was 2003 when first my daughters start having difficulty to stand up and able to walk their own and we received their first Convaid strollers for them. That day i find out to have a "wheelchair accessible van" is one of our biggest necessity when i first time carried my three girls in the van and fold those three heavy strollers to store them in the back of the van and was unable to stand up straight after that. It's been many many hard years since struggling of loading and unloading the 4 special needs for our uncountable trips to doctors, hospitals or going to the parks but continuously dragged myself knowing our limited resources and piling high medical bills. I cannot tell you how many tears have been dropped since the day someone caring enough to start this campaign for us. We have paid the down payment of the van from the funds we have received from this campaign from all of you kind people after "go fund me" cutting their 9% of it.
It's been truly a very humbling experience for me and Zarrar. Thank you "Shannon Moyer McNeil" and "Leslie Jurado" for making this happen. You all will be in my heart and prayers every time we take a trip in this van. May GOD bless you.
We got a call from "Fun Truck'n Mobility" that our van is delivered to them. Now they will install the lift here in NJ and within day or two we will have our van. This is the most exciting news ever. Just can't wait!
While we are still waiting anxiously for our wheel chair accessible van to arrive. Hopefully soon. Its been almost 5 months now. We had the biggest smiles on our faces on receiving both girls' very first custom build wheel chairs last week. After 4 years of trying, from 5 different mobility companies, measuring their sizes over and over, insurance issues and denials and resubmitting, so much of papers work, hours spend on phone along with the frustration when watching the girls' discomfort transporting in to their broken strollers and adding 20 pillows around them to make them comfortable....
It's a pure joy to see my girls sitting in their new chairs comfortably. Deep down it hurts so much with the fact my Khansa could never able to sit in her new chair when we measured and ordered all three wheel chairs at the same time.
Thank you all for your support and prayers in our journey.
Mabrook. Congratulations. Hopefully, this would help you both and the children.
I dont know if this could be helpful, but I came across it. You may have seen all of this already... Allah says He does has not created a disease except that He has also sent down it's cure. https://globalgenes.org/raredaily/clinical-research-study-on-sanfilippo-syndrome-type-a-mps-iii/ and https://www.sciencedaily.com/releases/2010/12/101202124203.htm along with https://www.rareconnect.org/en/community/sanfilippo-syndrome/learn/faq/what-is-genistein most importantly --->>>>> https://www.sciencedaily.com/releases/2014/08/140810213807.htm I pray there is some benefit to something here for you and your family, sis. Making duaa for all of you.