I’m Aml, mother of Yahia, a child with high risk B-Cell Acute Lymphoblastic Leukemia, located in United Arab of Emirates.
It was a shock to me and his dad when Yahia was diagnosed, especially because he didn’t have symptoms like bleeding from his nose or frequent fever and infections. He was very active and funny almost all the time. He had only some bruises on his leg. I took him to the pediatrician who ordered a cbc and diagnosed him on the same day. He was in the school in the morning and diagnosed in the evening.
We entered in-patient for a month and started the journey. We believe in God and we believe that he would never do something bad, so we had to hang in and do what we could to support our kid till we could get out of this adversity.
Also, we had to go through this almost alone because we are living away from our families. We are from Egypt but we live in UAE for my husband’s work. We have only 2 kids, Yahia and his twin sister Laila.
Yahia didn’t respond as needed in the induction phase so doctors decided to extend this phase 2 weeks. During the consolidation phase, he experienced an anaphylactic reaction to peg asparaginase in his second dose. It was so scary and they decided not to use it again. They told us about the global shortage of erwinaze. We started to search in other hospitals and ask other parents in a leukemia group who had the same situation.
At first another hospital in UAE helped us by giving some vials but another kid there had a peg asparaginase allergy so they couldn’t give us enough erwinaze vials to complete our son’s dose. It’s really to hard to feel that there is an important medicine for your child which will help him in his fight against cancer but you can’t get it because of business issues.
I was terrified that Yahia might skip an important medicine like this especially because he is in a very high risk protocol and he still didn’t reach remission. Based on the recommendation from another parent, I contacted Laura from Angels for Change on FaceBook. Honestly, I wasn’t sure that Angels for Change could help because we are not located in USA, but they really did a wonderful job in no time. They surprised me by telling me they had contacted an agent in the US who told them the EU division of the biologics company Jazz authorized some vials to my son on the spot.
We spoke to the Jazz agent here and they promised that the vials would arrive very soon and it did happen. That was a relief! They told us that two packs would be shipped very soon and another shipment would come for my son and also another child that had a reaction in another hospital. Angels for Change’s cooperation and support didn’t just help my son Yahia only; . . . they helped another child get his dose too. Laura ended up helping Yahia receive all of his needed courses for this medicine, 95 vials. Laura kept helping us for over 5 months. She continued following up and working to make sure he received this medicine and my son did reach remission.
That was such a very stressful time. I hope nobody faces this and I hope every child can get these life saving medicines easily. Angels for Change is really so kind and helpful. I thank them so much. We are lucky, as God put in our way people who can help us like Laura.